The first Cancer Registries were created in 1975 in France. Their ulterior development and their scientific production have been furthered by the apparition from 1986 under the aegis of the Health Ministry and of the INSERM, of a National Population Registry Committee. Cancer Registries have seriously contributed to a better knowledge of the cancer problem in our country and to describe the french specificities, in particular the importance of the mouth and pharynx cancers. They insure both a monitoring and an alert role; they also contribute to the medical supervision of the Chernobyl accident effects. French registries play a very active role concerning clinical research. They participate to many European studies of health care evaluation. In other respects, many etiological studies have been realized about professional risks of cancer, risks linked with nutritional habits, and on the etiologic role of the Tamoxifen. Finally, certain registries have created DNA banks. If nowadays their role in health planning remains modest, they very actively contribute in evaluating screening actions of breast, cervix and large bowel cancers. They also attracted the attention of Health Authorities on the cervix cancer screening's incoherencies. They evaluate the pilot project of the breast cancer and the registry of the Côte d'Or country evaluates the efficacity of a randomized colo rectal mass screening study. The main difficulties met by the registries are linked with the development of laws protecting more and more the individual freedoms, making it harder and harder the registration exhaustive character.
The Breast Cancer Family Registry and the Colon Cancer Family Registry were established by the National Cancer Institute as a resource for investigators to use in conducting studies on the genetics and molecular epidemiology of breast and colon cancer.
Wendy, L; Radzi, M
Colorectal cancer is emerging as one of the commonest cancers in Malaysia. Data on colorectal cancer from the National Cancer Registry is very limited. Comprehensive information on all aspects of colorectal cancer, including demographic details, pathology and treatment outcome are needed as the management of colorectal cancer has evolved rapidly over the years involving several disciplines including gastroenterology, surgery, radiology, pathology and oncology. This registry will be an important source of information that can help the development of guidelines to improve colorectal cancer care relevant to this country. The database will initially recruit all colorectal cancer cases from eight hospitals. The data will be stored on a customized web-based case report form. The database has begun collecting data from 1 October 2007 and will report on its first year findings at the end of 2008.
Jakobsen, Erik; Rasmussen, Torben Riis
AIM OF DATABASE: The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients. STUDY POPULATION: All Danish primary lung cancer patients since...... 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer. MAIN VARIABLES: The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance...... the results are commented for local, regional, and national audits. Indicator results are supported by descriptive reports with details on diagnostics and treatment. CONCLUSION: DLCR has since its creation been used to improve the quality of treatment of lung cancer in Denmark and it is increasingly used...
Schrøder, Henrik; Rechnitzer, Catherine; Wehner, Peder Skov
AIM OF DATABASE: The overall aim is to monitor the quality of childhood cancer care in Denmark; to register late effects of treatment; to analyze complications of permanent central venous catheters (CVCs); to study blood stream infections in children with cancer; and to study acute toxicity of high......-dose methotrexate infusions in children with leukemia. STUDY POPULATION: All children below 15 years of age at diagnosis living in Denmark diagnosed after January 1, 1985 according to the International Classification of Diseases 10, including diagnoses DC00-DD48. MAIN VARIABLES: Cancer type, extent of disease......, and outcome of antimicrobial chemotherapy. DESCRIPTIVE DATA: Since 1985, 4,944 children below 15 years of age have been registered in the database. There has been no significant change in the incidence of childhood cancer in Denmark since 1985. The 5-year survival has increased significantly since 1985...
Helgstrand, J Thomas; Klemann, Nina; Røder, Martin Andreas
of the prostate (TUR-Ps), and the remaining 22,028 (13.6%) specimens were derived from radical prostatectomies, bladder interventions, etc. A total of 48,078 (42.2%) males had histopathologically verified prostate cancer, and of these, 78.8% and 16.8% were diagnosed on prostate biopsies and TUR-Ps, respectively....... FUTURE PERSPECTIVES: A validated algorithm was successfully developed to convert complex prostate SNOMED codes into clinical useful data. A unique database, including males with both normal and cancerous histopathological data, was created to form the most comprehensive national prostate database to date...
Cuervo, L G; Roca, S; Rodríguez, M N; Stein, J; Izquierdo, J; Trujillo, A; Mora, M
The four primary objectives of this descriptive study were to: 1) design a quality-measurement instrument for institutional cancer registries (ICRs), 2) evaluate the existing ICRs in Colombia with the designed instrument, 3) categorize the different registries according to their quality and prioritize efforts that will efficiently promote better registries with the limited resources available, and 4) determine the institution with the greatest likelihood of successfully establishing Colombia's second population-based cancer registry. In 1990 the National Cancer Institute of Colombia developed 13 institution-based cancer registries in different Colombian cities in order to promote the collection of data from a large group of cancer diagnostic and treatment centers. During the first half of 1997, this evaluation reviewed 12 registries; one of the original 13 no longer existed. All of the Colombian institutions (hospitals) that maintain institution-based cancer registries were included in the study. At each institution, a brief survey was administered to the hospital director, the registry coordinator, and the registrar (data manager). Researchers investigated the institutions by looking at six domains that are in standard use internationally. Within each domain, questions were developed and selected through the Delphi method. Each domain and each question were assigned weights through a consensus process. In most cases, two interviewers went to each site to collect the information. The university hospitals in Cali, Pereira, and Medellín had substantially higher scores, reflecting a good level of performance. Four of the 12 institutions had almost no cancer registry work going on. Five of the 12 hospital directors considered that the information provided by the cancer registries influenced their administrative decisions. Three of the registries had patient survival data. Four of the institutions allocated specific resources to operate their cancer registries; in the
Department of Veterans Affairs — The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local...
U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...
Anazawa, Takayuki; Miyata, Hiroaki; Gotoh, Mitsukazu
The cancer registry is an essential part of any rational program of evidence-based cancer control. The cancer control program is required to strategize in a systematic and impartial manner and efficiently utilize limited resources. In Japan, the National Clinical Database (NCD) was launched in 2010. It is a nationwide prospective registry linked to various types of board certification systems regarding surgery. The NCD is a nationally validated database using web-based data collection software; it is risk adjusted and outcome based to improve the quality of surgical care. The NCD generalizes site-specific cancer registries by taking advantage of their excellent organizing ability. Some site-specific cancer registries, including pancreatic, breast, and liver cancer registries have already been combined with the NCD. Cooperation between the NCD and site-specific cancer registries can establish a valuable platform to develop a cancer care plan in Japan. Furthermore, the prognosis information of cancer patients arranged using population-based and hospital-based cancer registries can help in efficient data accumulation on the NCD. International collaboration between Japan and the USA has recently started and is expected to provide global benchmarking and to allow a valuable comparison of cancer treatment practices between countries using nationwide cancer registries in the future. Clinical research and evidence-based policy recommendation based on accurate data from the nationwide database may positively impact the public.
The national cancer registry in Japan will commence operations in January 2016 under the Cancer Registry Promotion Act, which was established in December 2013. Although data on cancer incidence and survival rates in Japan have been available for limited regions for a long time, accurate nationwide data obtained from the national cancer registry database will contribute to the planning and evaluation of cancer control in Japan. It is expected that this database will be utilized in evaluating the quality of medical care for cancer patients, in assessing the accuracy of cancer screening, and in follow-up surveys in nationwide cohort studies. Furthermore, under the Cancer Registry Promotion Act, hospitals will be permitted to obtain vital patient information from data registered in the national cancer registry database, which will promote the publication of survival rates for cancer patients and accelerate research at hospitals. The founding of the Japanese national cancer registry is a landmark development in the promotion of cancer control and cancer research in Japan and it is essential that the Japanese population benefits from the information obtained from this database.
A health economist at CDC talks about a new tool for estimating how much it costs to run cancer registries in developing countries. Created: 11/21/2016 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 11/21/2016.
Chapman, Susan A; Mulvihill, Linda; Herrera, Carolina
The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions,together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey.Results indicate that registries faced reductions in budgeted staffing from 2008-2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing,case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however,estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines.
Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon
A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.
Wanqing Chen; Rongshou Zheng; Siwei Zhang; Ping Zhao; Guanglin Li; Lingyou Wu; Jie He
The National Central Cancer Registry (NCCR) collected cancer registration data in 2009 from local cancer registries in 2012,and analyzed to describe cancer incidence and mortality in China.Methods.:On basis of the criteria of data quality from NCCR,data subrnitted from 104 registries were checked and evaluated.There were 72 registries' data qualified and accepted for cancer registry annual report in 2012.Descriptive analysis included incidence and mortality stratified by area (urban/rural),sex,age group and cancer site.The top 10 common cancers in different groups,proportion and cumulative rates were also calculated.Chinese population census in 1982 and Segi's population were used for age-standardized incidence/mortality rates.Results:All 72 cancer registries covered a total of 85,470,522 population (57,489,009 in urban and 27,981,513 in rural areas).The total new cancer incident cases and cancer deaths were 244,366 and 154,310,respectively.The morphology verified cases accounted for 67.23％,and 3.14％ of incident cases only had information from death certifications.The crude incidence rate in Chinese cancer registration areas was 285.91/100,000(males 317.97/100,000,females 253.09/100,000),age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) were 146.87/100,000 and 191.72/100,000 with the cumulative incidence rate (0-74 age years old) of 22.08％.The cancer incidence and ASIRC were 303.39/100,000 and 150.31/100,000 in urban areas whereas in rural areas,they were 249.98/100,000 and 139.68/100,000,respectively.The cancer mortality in Chinese cancer regist-ation areas was 180.54/100,000 (224.20/100,000 in males and 135.85/100,000 in females),age-standardized umortality rates by Chinese standard population (ASMRC) and by world standard population (ASMRW) were 85.06/100,000 and 115.65/100,000,and the cumulative incidence rate (0-74 age years old) was 12.94％.The cancer mortality and ASMRC were 181
Langseth, Hilde; Luostarinen, Tapio; Bray, Freddie; Dillner, Joakim
The Nordic countries have a long tradition of providing comparable and high quality cancer data through the national population-based cancer registries and the capability to link the diverse large-scale biobanks currently in operation. The joining of these two infrastructural resources can provide a study base for large-scale studies of etiology, treatment and early detection of cancer. Research projects based on combined data from cancer registries and biobanks provides great opportunities, but also presents major challenges. Biorepositories have become an important resource in molecular epidemiology, and the increased interest in performing etiological, clinical and gene-environment-interaction studies, involving information from biological samples linked to population-based cancer registries, warrants a joint evaluation of the quality aspects of the two resources, as well as an assessment of whether the resources can be successfully combined into a high quality study. While the quality of biospecimen handling and analysis is commonly considered in different studies, the logistics of data handling including the linkage of the biobank with the cancer registry is an overlooked aspect of a biobank-based study. It is thus the aim of this paper to describe recommendations on data handling, in particular the linkage of biobank material to cancer registry data and the quality aspects thereof, based on the experience of Nordic collaborative projects combining data from cancer registries and biobanks. We propose a standard documentation with respect to the following topics: the quality control aspects of cancer registration, the identification of cases and controls, the identification and use of data confounders, the stability of serum components, historical storage conditions, aliquoting history, the number of freeze/thaw cycles and available volumes.
CHEN Jian-guo; Sankaranarayanan R; SHEN Zhuo-cai; Black RJ; YAO Hong-yu; LI Wen-guang; Parkin DM
Objective: 16,922 patients with cancers from 15 sites of Qidong population-based cancer registry in the period of 1982-1991 were analyzed for evaluation of cancer survival as well as different cancer control measures.Methods: Observed survival rate (OS) was computed by the Kaplan-Meier method using EGRET statistical software package. Relative survival (RS) which is the ratio of the OS to the expected rate was calculated by using Qidong life table with respect to sex, age and calendar period of observation. Results: The five-year OS for the 5 leading sites of cancers, liver, stomach, lung,oesophagus, and rectum were 1.8%, 11.6%, 3.0% 3.3%,and 19.9%, respectively. The five-year RS for the 5 sites were 1.9%, 14.0%, 3.6%, 4.2%, and 23.7%, respectively,in which, 1.7%, 14.8%, 3.4%, 4.2%, and 26.0% for males, and 2.7%, 12.7%, 4.1%, 4.0%, and 22.0% for females, respectively. Female patients with breast cancer and cervix cancer had 5-year RS of 54.6% and 33.0%.Conclusion: Cancer survival rates for all sites are poor,in which that of the liver is the lowest, while that of the breast, the highest. The survivals of cancers for all sites,especially for breast, cervix, and leukemia are seen to be lower than those of European countries except for oesophagus, pancreas and lung cancer which do not achieve improved survival both in developing and developed countries. There will be a long way to improve the total cancer survival, as well as the cancer treatment in the developing countries.
Wan-qing Chen; Rong-shou Zheng; Si-wei Zhang; Ni Li; Ping Zhao; Guang-lin Li; Liang-you Wu; Jie He
Objective:Annual cancer incidence and mortality in 2008 were provided by National Central Cancer Registry in China,which data were collected from population-based cancer registries in 2011.Methods:There were 56 registries submitted their data in 2008.After checking and evaluating the data quality,total 41 registries' data were accepted and pooled for analysis.Incidence and mortality rates by area (urban or rural areas) were assessed,as well as the age-and sex-specific rates,age-standardized rates,proportions and cumulative rate.Results:The coverage population of the 41 registries was 66,138,784 with 52,158,495 in urban areas and 13,980,289 in rural areas.There were 197,833 new cancer cases and 122,136 deaths in cancer with mortality to incidence ratio of 0.62.The morphological verified rate was 69.33％,and 2.23％ of cases were identified by death certificate only.The crude cancer incidence rate in all areas was 299.12/100,000 (330.16/100,000 in male and 267.56/100,000 in female) and the age-standardized incidence rates by Chinese standard population (ASIRC) and world standard population (ASIRW) were 148.75/100,000 and 194.99/100,000,respectively.The cumulative incidence rate (0-74 years old) was of 22.27％.The crude incidence rate in urban areas was higher than that in rural areas.However,after adjusted by age,the incidence rate in urban was lower than that in rural.The crude cancer mortality was 184.67/100,000 (228.14/100,000 in male and 140.48/100,000 in female),and the age-standardized mortality rates by Chinese standard population (ASMRC) and by world population were 84.36/100,000 and 114.32/100,000,respectively.The cumulative mortality rate (0-74 years old) was of 12.89％.Age-adjusted mortality rates in urban areas were lower than that in rural areas.The most common cancer sites were lung,stomach,colon-rectum,liver,esophagus,pancreas,brain,lymphoma,breast and cervix which accounted for 75％ of all cancer incidence.Lung cancer was the leading cause of
Cancer registries have fundamental roles in cancer surveillance, research, and health services planning, monitoring and evaluation. Many are now assuming a broader role by contributing data for health-service management, alongside data inputs from other registries and administrative data sets. These data are being integrated into de-identified databases using privacy-protecting data linkage practices. Structured pathology reporting is increasing registry access to staging and other prognostic descriptors. Registry directions need to vary, depending on local need, barriers and opportunities. Flexibility and adaptability will be essential to optimize registry contributions to cancer control.
Mohammadzadeh, Niloofar; Safdari, Reza; Rahimi, Azin
In the new millennium people are facing serious challenges in health care, especially with increasing non- communicable diseases (NCD). One of the most common NCDs is cancer which is the leading cause of death in developed countries and in developing countries is the second cause of death after heart diseases. Cancer registry can make possible the analysis, comparison and development of national and international cancer strategies and planning. Information technology has a vital role in quality improvement and facility of cancer registries. With the use of IT, in addition to gaining general benefits such as monitoring rates of cancer incidence and identifying planning priorities we can also gain specific advantages such as collecting information for a lifetime, creating tele medical records, possibility of access to information by patient, patient empowerment, and decreasing medical errors. In spite of the powerful role of IT, we confront various challenges such as general problems, like privacy of the patient, and specific problems, including possibility of violating patients rights through misrepresentation, omission of human relationships, and decrease in face to face communication between doctors and patients. By implementing appropriate strategies, such as identifying authentication levels, controlling approaches, coding data, and considering technical and content standards, we can optimize the use of IT. The aim of this paper is to emphasize the need for identifying positive and negative effects of modern IT on cancer registry in general and specific aspects as an approach to cancer care management.
Nsondé Malanda, Judith; Nkoua Mbon, Jean Bernard; Bambara, Augustin Tozoula; Ibara, Gérard; Minga, Benoît; Nkoua Epala, Brice; Gombé Mbalawa, Charles
The Brazzaville cancer registry was created in 1996 with the support of the International Agency Research against Cancer (IARC) which is located in Lyon, France. The Brazzaville cancer registry is a registry which is based on population which records new cancer cases occurring in Brazzaville by using Canreg 4.0 Software. Its aim is to supply useful information to fight against cancer to physicians and to decision makers. We conducted this study whose target was to determine the incidence of cancer in Brazzaville during twelve years, from January 1st, 1998 to December 31, 2009. During that period 6,048 new cancer cases were recorded: 3,377 women (55.8%), 2,384 men (39.4%), and 287 children (4.8%) from 0 to 14 years old with an annual average of 504 cases. Middle age to the patient's diagnosis was 49.5 years in female sex and 505.5 years old for male sex. The incidence rate of cancers in Brazzaville was 39.8 or 100.000 inhabitants per year and by sex we observed 49 to female sex and 35.2 for male sex. The first cancers localizations observed to women were in order of frequency: breast, cervix uterine, liver ovaries, hematopoietic system, to men : liver, prostate, hematopoietic system, colon and stomach; to children : retina, kidney, hematopoietic system, liver and bones. These rates are the basis to know the burden of cancer among all pathologies of Brazzaville and the achievement of a national cancer control program.
Full Text Available Background: Breast cancer is the most common female cancer worldwide. Survival rate of breast cancer, especially as an indicator of the successful implementation of screening, diagnosis and treatment programs, has been at the center of attention of public health experts Material and Methods: In a survival study, the records of breast cancer cases in cancer registry system of Bushehr Province were extracted during 2001, March to 2013, September. These records were linked and matched with records of death registry system. After determining patients, status regarding being alive or dead, survival analysis was done. Life table, Kaplan-Mayer analysis, log rank and Breslow tests were used for computing and comparing survival rates. Results: In 300 recorded breast cancer cases, mean and standard deviation of age was 51.26±13.87. Survival rates were 95, 88, 78, 73 and 68 percent since the first year through the fifth year, respectively. Mean survival was 87.20 months (95% CI= 81.28- 93.12. There was no significant difference in mean survival regarding age and different geographical areas. Conclusion: Although survival rates of registered breast cancer patients in Bushehr Province are similar to other provinces, they are far from those of developed countries. This situation demands more extensive efforts regarding public education and improving the process of diagnosis, treatment and care of patients especially during first two years after diagnosis.
Karstensen, Krista A.
Spearheaded by the Geographic Analysis and Monitoring Program of the U.S. Geological Survey (USGS) in collaboration with the U.S. Environmental Protection Agency (EPA) and the National Aeronautics and Space Administration (NASA), the Land Cover Trends is a research project focused on understanding the rates, trends, causes, and consequences of contemporary United States land-use and land-cover change. Using the EPA Level III ecoregions as the geographic framework, scientists process geospatial data collected between 1973 and 2000 to characterize ecosystem responses to land-use changes. The 27-year study period was divided into five temporal periods: 1973-1980, 1980-1986, 1986-1992, 1992-2000 and 1973-2000. General land-cover classes for these periods were interpreted from Landsat Multispectral Scanner, Thematic Mapper, and Enhanced Thematic Mapper Plus imagery to categorize land-cover change and evaluate using a modified Anderson Land Use Land Cover Classification System for image interpretation. The rates of land-cover change are estimated using a stratified, random sampling of 10-kilometer (km) by 10-km blocks allocated within each ecoregion. For each sample block, satellite images are used to interpret land-cover change. Additionally, historical aerial photographs from similar timeframes and other ancillary data such as census statistics and published literature are used. The sample block data are then incorporated into statistical analyses to generate an overall change matrix for the ecoregion. These change statistics are applicable for different levels of scale, including total change for the individual sample blocks and change estimates for the entire ecoregion. The results illustrate that there is no single profile of land-cover change but instead point to geographic variability that results from land uses within ecoregions continuously adapting to various factors including environmental, technological, and socioeconomic.
Fajardo-Gutiérrez, Arturo; González-Miranda, Guadalupe
Since 1996 at the unit of epidemiological research of the "Hospital de Pediatría en Centro Medico Nacional Siglo XXI" a cancer registry in children has been done. This registry has been a pioneer with special features like be only in child population attended in Mexico City. The following paper describes the main characteristics of the registry, the strategy used to obtain the data, the quality criterion applied for selecting data like timeliness, validated and complete. A longitudinal and prolective data was obtained. There was a training period for obtaining and register the data. The data was obtained from children with neoplasm attended at the mentioned hospital above. The diagnosis of a solid neoplasm was established by histology and marrow aspirated studies. The population studied was children (0-14 years). It was calculated the incidence (per 1000 000 children/year) by age, sex, diagnosis and place of residence. The trend was evaluated by estimating the average annual percent of change.
Crocetti, Emanuele; Buzzoni, Carlotta
The study of cluster requires the ability to identify, with accuracy and completeness, the health events of interest and their geographical location and time of occurrence. For rare and complex diseases, such as childhood cancers, it is possible to observe a significant health migration from the place of residence, which makes the detection even more complex. The best tool to identify these rare diseases is represented by cancer registries (CRs). In fact, CRs collect, through many sources, information related to tumours that arise in the population resident in their areas of activity. The number of the sources of information has increased thanks to the computerization of health services. The availability of multiple sources of information increases the completeness of data collection overcoming the limits of a single source, and makes it possible to describe the diagnostic-therapeutic course and the outcome of the cases. Among all data sources, for childhood cancers the model 1.01, which summarize the clinical information of the cases treated in one of the Italian Association of paediatric haematology and oncology (AIEOP) centres, is relevant. Moreover, CRs produce reliable and comparable data due to the use of international rules and classifications for the definition of the topography and morphology of cancer, for the date of diagnosis, and for quality checks. In Italy, the Italian association of cancer registries (AIRTUM) coordinates the activities of 45 population CRs, both general and specialized (by age or tumour type). AIRTUM involves a population of over 6.7 million citizens under the age of 20 years, approximately 60% of the total resident population. AIRTUM plays a role of coordination, support, and harmonization for Italian CRs through training, accreditation, and a shared database, it promotes and participates in national and international collaboration involving scientific societies (AIEOP, Italian Association of medical oncology - AIOM, Italian
Ito, Yuri; Miyashiro, Isao; Ito, Hidemi; Hosono, Satoyo; Chihara, Dai; Nakata-Yamada, Kayo; Nakayama, Masashi; Matsuzaka, Masashi; Hattori, Masakazu; Sugiyama, Hiromi; Oze, Isao; Tanaka, Rina; Nomura, Etsuko; Nishino, Yoshikazu; Matsuda, Tomohiro
Although we usually report 5-year cancer survival using population-based cancer registry data, nowadays many cancer patients survive longer and need to be followed-up for more than 5 years. Long-term cancer survival figures are scarce in Japan. Here we report 10-year cancer survival and conditional survival using an established statistical approach. We received data on 1 387 489 cancer cases from six prefectural population-based cancer registries in Japan, diagnosed between 1993 and 2009 and ...
Siesling, S.; Louwman, W.J.; Kwast, A.; Hurk, van den C.J.G.; O'Callaghan, M.; Rosso, S.; Zanetti, R.; Storm, H.; Comber, H.; Steliarova-Foucher, E.; Coebergh, J.W.W.
Aim To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the
Schouten, LJ; Langendijk, JA; Jager, JJ; vandenBrandt, PA
Information collected in a clinical study on a random sample of 99 patients with inoperable lung cancer, treated with radiotherapy, was compared to the staging information in the Maastricht cancer registry. Validity of sex (0% disagreements), date of birth (0%), histology (1% major disagreements) an
Full Text Available Abstract Background Use of gonadotropin-releasing hormone (GnRH agonists has become popular for virtually all stages of prostate cancer. We hypothesized that some men receive these agents after only a limited work-up for their cancer. Such cases may be missed by tumor registries, leading to underestimates of the total extent of GnRH agonist use. Methods We used linked Surveillance, Epidemiology and End-Results (SEER-Medicare data from 1993 through 2001 to identify GnRH agonist use in men with either a diagnosis of prostate cancer registered in SEER, or with a diagnosis of prostate cancer based only on Medicare claims (from the 5% control sample of Medicare beneficiaries residing in SEER areas without a registered diagnosis of cancer. The proportion of incident GnRH agonist users without a registry diagnosis of prostate cancer was calculated. Factors associated with lack of a registry diagnosis were examined in multivariable analyses. Results Of incident GnRH agonist users, 8.9% had no diagnosis of prostate cancer registered in SEER. In a multivariable logistic regression model, lack of a registry diagnosis of prostate cancer in GnRH agonist users was significantly more likely with increasing comorbidity, whereas it was less likely in men who had undergone either inpatient admission or procedures such as radical prostatectomy, prostate biopsy, or transurethral resection of the prostate. Conclusion Reliance solely on tumor registry data may underestimate the rate of GnRH agonist use in men with prostate cancer.
Chen, Vivien W; Eheman, Christie R; Johnson, Christopher J; Hernandez, Monique N; Rousseau, David; Styles, Timothy S; West, Dee W; Hsieh, Meichin; Hakenewerth, Anne M; Celaya, Maria O; Rycroft, Randi K; Wike, Jennifer M; Pearson, Melissa; Brockhouse, Judy; Mulvihill, Linda G; Zhang, Kevin B
Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Re-investment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control.
U.S. Department of Health & Human Services — SEER Limited-Use cancer incidence data with associated population data. Geographic areas available are county and SEER registry. The Surveillance, Epidemiology, and...
Ingimarsdóttir, Inga Jóna; Rusch, Ea; Engholm, Gerda;
analyzed. MATERIAL AND METHODS: Patients diagnosed with prostate cancer from 1 May to 31 December 1997 and living in eight Danish counties were identified through the DCR. Clinical data was retrieved from hospital records where date of diagnosis, stage at diagnosis and treatment received were registered......BACKGROUND: The Danish Cancer Registry (DCR) is the oldest nationwide population-based cancer registry in the Nordic countries. At the time of the study the DCR recorded date of diagnosis, tumor stage and initial treatment. The validity of the clinical information reported to the DCR has never been...... differences concerning the date of diagnosis. However, the DCR information on stage and treatment was found to be inaccurate. Since 2004 the DCR registration process, including staging according to the TNM classification, has been carried out electronically from several registers. Future comparison between...
Park, Yu Rang; Kim, Ju Han
Standardized management of data elements (DEs) for Case Report Form (CRF) is crucial in Clinical Trials Information System (CTIS). Traditional CTISs utilize organization-specific definitions and storage methods for Des and CRFs. We developed metadata-based DE management system for clinical trials, Clinical and Histopathological Metadata Registry (CHMR), using international standard for metadata registry (ISO 11179) for the management of cancer clinical trials information. CHMR was evaluated in cancer clinical trials with 1625 DEs extracted from the College of American Pathologists Cancer Protocols for 20 major cancers.
Nguyen, Anthony N; Moore, Julie; O'Dwyer, John; Philpot, Shoni
Cancer Registries record cancer data by reading and interpreting pathology cancer specimen reports. For some Registries this can be a manual process, which is labour and time intensive and subject to errors. A system for automatic extraction of cancer data from HL7 electronic free-text pathology reports has been proposed to improve the workflow efficiency of the Cancer Registry. The system is currently processing an incoming trickle feed of HL7 electronic pathology reports from across the state of Queensland in Australia to produce an electronic cancer notification. Natural language processing and symbolic reasoning using SNOMED CT were adopted in the system; Queensland Cancer Registry business rules were also incorporated. A set of 220 unseen pathology reports selected from patients with a range of cancers was used to evaluate the performance of the system. The system achieved overall recall of 0.78, precision of 0.83 and F-measure of 0.80 over seven categories, namely, basis of diagnosis (3 classes), primary site (66 classes), laterality (5 classes), histological type (94 classes), histological grade (7 classes), metastasis site (19 classes) and metastatic status (2 classes). These results are encouraging given the large cross-section of cancers. The system allows for the provision of clinical coding support as well as indicative statistics on the current state of cancer, which is not otherwise available.
Darlene Veruttipong; Amr S Soliman; Samuel F Gilbert; Taylor S Blachley; Ahmed Hablas; Mohamed Ramadan; Laura S Rozek; Ibrahim A Seifeldin
AIM:To describe the clinical and epidemiologic profiles of the disease and to compare the findings with those generated from the previous hospital-based studies.METHODS:The Gharbiah cancer registry is the only population-based cancer registry in Egypt since 1998.We analyzed the data of all colorectal cancer patients included in the registry for the period of 1999-2007.All medical records of the 1364 patients diagnosed in Gharbiah during the study period were retrieved and the following information abstracted:age,residence,diagnosis date,grade,stage,topology,clinical characteristics,and histology variables.Egyptian census data for 1996 and 2006 were used to provide the general population's statistics on age,sex,residence and other related demographic factors.In addition to age-and sex-specific incidence rate analyses,we analyze the data to explore the incidence distribution by rural-urban differences among the 8 districts of the province.We also compared the incidence rates of Gharbiah to the rates of the Surveillance Epidemiology and End Results (SEER) data of the United States.RESULTS:Over the 9 year-period,1364 colorectal cancer cases were included.The disease incidence under age 40 years was relatively high (1.3/105) while the incidence in the age groups 40 and over was very low (12.0/105,19.4/105 and 21.2/105 in the age groups 40-59 years,60-69 years and ＞ 70 years,respectively).The vast majority of tumors (97.2％) had no polyps and 37.2％ of the patients presented with primary lesions in the rectum.Colorectal cancer was more common in patients from urban (55％) than rural (45％) areas.Regional differences in colon and rectal cancer incidence in the 8 districts of the study province may refleet different etiologic patterns in this population.The registry data of Egypt shows a slightly higher incidence of colorectal cancer than the United States in subjects under age 40 years.The results also shows significantly lower incidence of colorectal cancer in
Lehnert, M; Kraywinkel, K; Pesch, B; Holleczek, B; Brüning, T
This analysis aimed at occurrence and distribution patterns of new malignancies following bladder cancer. Standardised incidence ratios (SIRs) were calculated for two German population-based cancer registries of North Rhine-Westphalia (NRW) and Saarland to access risks for subsequent primaries. An elevated risk for secondary cancer of any site but urothelium was observed in NRW men [SIR 1.35, 95% confidence interval (CI) 1.22-1.49]. The corresponding risk in Saarland was not significantly elevated (SIR 1.06, 95% CI 0.97-1.15). In data of both registries excess risks were observed for cancer of the respiratory tract (SIR 1.54, CI 1.23-1.89 in NRW men) and the prostate (SIR 1.91, 95% CI 1.61-2.24 in NRW; SIR 1.25, 95% CI 1.07-1.45 in Saarland). Common risk factors and incidental findings during follow-up care of bladder cancer patients might explain most of the observed patterns. In addition SIRs were throughout particular high for subsequent cancer of the renal pelvis and the ureter due to pathological characteristics of urothelial neoplasms.
Full Text Available Title: Multi-institutional Registry for Prostate Cancer Radiosurgery: An Observational Clinical TrialAuthors: Debra Freeman, MD*; Gregg Dickerson, MD; Mark Perman, MDObjective: To report on the design, methodology and early outcome results of a multi-institutional registry study of prostate cancer radiosurgery.Methods: The Registry for Prostate Cancer Radiosurgery (RPCR was established in 2010 to further evaluate the efficacy and toxicity of prostate radiosurgery (SBRT for the treatment of clinically localized prostate cancer. Men with prostate cancer were asked to voluntarily participate in the Registry. Demographic, baseline medical and treatment-related data were collected and stored electronically in a HIPAA-compliant database, maintained by Advertek, Inc. Enrolled men were asked to complete short, multiple choice questionnaires regarding their bowel, bladder and sexual function. Patient-reported outcome forms were collected at baseline and at regular intervals (every 3-6 months following treatment. Serial PSA measurements were obtained at each visit and included in the collected data.Results: From July 2010 to July 2013, nearly 2000 men from 45 participating sites were enrolled in the registry. The majority (86% received radiosurgery as monotherapy. At 2 years follow-up, biochemical disease free survival was 92%. No Grade 3 late urinary toxicity was reported. One patient developed Grade 3 gastrointestinal toxicity (rectal bleeding. Erectile function was preserved in 80% of men <70 yeats old. Overall compliance with data entry was 64%.Conclusion: Stereotactic radiosurgery is an alternative option to conventional radiotherapy for the treatment of organ-confined prostate cancer. The Registry for Prostate Cancer Radiosurgery represents the collective experience of multiple institutions, including community-based cancer centers, with outcome results in keeping with published, prospective trials of prostate SBRT.
Tkatsjov Anatolij V
Full Text Available Abstract Background Data concerning incidence and prevalence of cancer in the different regions of Russia have traditionally not been provided on a basis that facilitated comparison with data from countries in western parts of Europe. The oncological hospital in Arkhangelsk, in co-operation with Universitetet i Tromsø (Norway, has established a population based cancer registry for Arkhangelskaja Oblast (AO. AO is an administrative unit with 1.3 million inhabitants in northwestern Russia. The aim of this investigation was to assess the content and quality of the AO cancer registry (AKR, and to present the site-specific cancer-incidence rates in AO in the period 1993–2001. Methods The population in this study consisted of all individuals registered as residents of AO. All new cancer cases in the period 1993 – 2001, registered the AKR, were included in the study (ICD-10: C00-C95, except for C77-78. The annual gender and age-group-specific population figures were obtained from the AO statistics office. Results A total of 34 697 cases of primary cancers were included. The age-adjusted (world standard incidence rate for all sites combined was 164/100 000 for women and 281/100 000 for men. The highest incidence was for cancer of the trachea, bronchus and lung (16.3% of all cases, whereof 88.6 % of the cases were among men. Among women, cancer of the breast constituted 15.9 percent of all cases. The age-adjusted incidences of the most frequent cancer sites among men were: lung (77.4/100 000; stomach (45.9; rectum (13.4; oesophagus (13.0; colon (12.2; bladder (11.6; and prostate cancer (11.1. Among women they were: breast (28.5; stomach (19.7; colon (12.2; and ovary cancer (9.0. Conclusion Our findings confirm and strengthen the indication that the incidences of stomach, larynx, liver, pancreas, prostate, colon, bladder and melanoma cancer are quite different in male populations in Russia compared to many other European countries. Among women, most
Full Text Available Objectives: In the absence of unique ID numbers, cancer and other registries in Germany and elsewhere rely on identity data to link records pertaining to the same patient. These data are often encrypted to ensure privacy. Some record linkage errors unavoidably occur. These errors were quantified for the cancer registry of North Rhine Westphalia which uses encrypted identity data. Methods: A sample of records was drawn from the registry, record linkage information was included. In parallel, plain text data for these records were retrieved to generate a gold standard. Record linkage error frequencies in the cancer registry were determined by comparison of the results of the routine linkage with the gold standard. Error rates were projected to larger registries.Results: In the sample studied, the homonym error rate was 0.015%; the synonym error rate was 0.2%. The F-measure was 0.9921. Projection to larger databases indicated that for a realistic development the homonym error rate will be around 1%, the synonym error rate around 2%.Conclusion: Observed error rates are low. This shows that effective methods to standardize and improve the quality of the input data have been implemented. This is crucial to keep error rates low when the registry’s database grows. The planned inclusion of unique health insurance numbers is likely to further improve record linkage quality. Cancer registration entirely based on electronic notification of records can process large amounts of data with high quality of record linkage.
Full Text Available Abstract Background Recruiting large and representative samples of adolescent and young adult (AYA cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56% received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8% refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32 completed the questionnaire. Conclusions Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered.
Full Text Available "nBackground: Ardabil cancer registry is the first population-based cancer registry in Iran that was established in 2000. The first report from this registry revealed that Ardabil has one of the highest rate of gastric cardia cancer and the lowest rate of cervical cancer in the world. We aim to update the cancer incidence in this area by the second follow up report from this registry."nMethod: Data on all newly diagnosed cancer cases between 2004 and 2006 were actively collected. CanReg4 software was used for data entry and the data of cancer-related death were obtained from the comprehensive death registry system."nResults: More than 4300 new cases were registered during 3 years. Diagnosis of cancer was based on histopathology in 69%, clinical investigation 8%, clinical only 5%, and Death Certiﬁcate Only (DCO in 18% of cases. In terms of age-standardized rate (/100,000, the five leading cancers in men (excluding skin cancer were stomach (51.8, esophagus (19.5, bladder (13.1, lung and bronchus (10.8, and colorectal (9.6; in women, they were stomach (24.9, esophagus (19.7, breast (11.9, colon and rectum (7.4, and brain tumors (6.9. According to death registration data, upper gastrointestinal cancers constituted more than 43% of cancer-related death in Ardabil."nConclusions: The ASR for gastric cancer is among the highest rate for this cancer in male and female in the world. Most of the cancers, especially in female, have a significant increase compared to previous report from Ardabil. This is most likely due to the change in the registration practice.
Hannah K. Weir, PhD
Full Text Available Introduction The Centers for Disease Control and Prevention’s National Program of Cancer Registries is a federally funded surveillance program that provides support and assistance to state and territorial health departments for the operation of cancer registries. The objective of this study was to identify factors associated with the Centers for Disease Control and Prevention’s costs to report cancer cases during the first 5 years of the National Program of Cancer Registries. Methods Information on expenditures and number of cases reported through the National Program of Cancer Registries was used to estimate the average cost per case reported for each state program. Additional information was obtained from other sources, and regression analyses were used to assess the contribution of each factor. Results Average costs of the National Program of Cancer Registries differed substantially among programs and were inversely associated with the number of cases reported (P < .001. The geographic area of the state was positively associated with the cost (P = .01, as was the regional cost of living (P = .08, whereas the program type (i.e., enhancement or planning was inversely associated with cost (P = .08. Conclusion The apparent existence of economies of scale suggests that contiguous state programs might benefit from sharing infrastructure and other fixed costs, such as database management resources, depending on the geographic area and population size served. Sharing database management resources might also promote uniform data collection and quality control practices, reduce the information-sharing burden among states, and allow more resources to be used for other cancer prevention and control activities.
Sankaranarayanan, Jayashri; Watanabe-Galloway, Shinobu; Sun, Junfeng; Qiu, Fang; Boilesen, Eugene; Thorson, Alan G.
Background: There are no studies of rurality, and other determinants of colorectal cancer (CRC) stage at diagnosis with population-based data from the Midwest. Methods: This retrospective study identified, incident CRC patients, aged 19 years and older, from 1998-2003 Nebraska Cancer Registry (NCR) data. Using federal Office of Management and…
Full Text Available Abstract Background Cancer is a leading cause of morbidity and mortality worldwide with a majority of cases and deaths occurring in developing countries. While cancer of the lung, breast, colorectum, stomach and prostate are the most common types of cancer globally, in east and southern Africa these are less common and comprehensive data to inform policies are lacking. Methods Nationwide cancer registry was conducted between September and October 2010 in Malawi. New cancer cases registered from 2007 to 2010 were identified from hospital and clinic registers of 81 out of 84 health facilities providing cancer diagnosis, treatment or palliative care services. Demographic and cancer data were extracted from registers and case notes using a standard form. Results A total of 18,946 new cases of cancer were registered in Malawi from 2007-2010. Of these 55.9% were females, 7.2% were children aged less than 15 years, 76.5% were adults aged 15-59 years and 16.4% were elderly aged 60 years or more. Only 17.9% of the cases had histologically verified diagnosis, 33.2% were diagnosed clinically and 49.6% based on clinical and some investigations. Amongst females, cancer of the cervix was the commonest accounting for 45.4% of all cases followed by Kaposi sarcoma (21.1%, cancer of the oesophagus (8.2%, breast (4.6% and non-Hodgkin lymphoma (4.1%. In males, Kaposi sarcoma was the most frequent (50.7% then cancer of oesophagus (16.9%, non-Hodgkin lymphoma (7.8, prostate (4.0% and urinary bladder (3.7%. Age-standardised incidence rate per 100,000 population for all types of cancer in males increased from 31 in 1999-2002 to 56 in 2007-2010. In females it increased from 29 to 69. Kaposi sarcoma and cancer of the oesophagus, cervical cancer and Kaposi sarcoma were the main causes for the increased incidence in males and females respectively. It was estimated that, annually at least 8,151 new cases of cancer (all types occur in Malawi. Conclusions This study provided
Baili, Paolo; Torresani, Michele; Agresti, Roberto; Rosito, Giuseppe; Daidone, Maria Grazia; Veneroni, Silvia; Cavallo, Ilaria; Funaro, Francesco; Giunco, Marco; Turco, Alberto; Amash, Hade; Scavo, Antonio; Minicozzi, Pamela; Bella, Francesca; Meneghini, Elisabetta; Sant, Milena
In clinical research, many potentially useful variables are available via the routine activity of cancer center-based clinical registries (CCCR). We present the experience of the breast cancer clinical registry at Fondazione IRCCS "Istituto Nazionale dei Tumori" to give an example of how a CCCR can be planned, implemented, and used. Five criteria were taken into consideration while planning our CCCR: (a) available clinical and administrative databases ought to be exploited to the maximum extent; (b) open source software should be used; (c) a Web-based interface must be designed; (d) CCCR data must be compatible with population-based cancer registry data; (e) CCCR must be an open system, able to be connected with other data repositories. The amount of work needed for the implementation of a CCCR is inversely linked with the amount of available coded data: the fewer data are available in the input databases as coded variables, the more work will be necessary, for information technology staff, text mining analysis, and registrars (for collecting data from clinical records). A cancer registry in a comprehensive cancer center can be used for several research aspects, such as estimate of the number of cases needed for clinical studies, assessment of biobank specimens with specific characteristics, evaluation of clinical practice and adhesion to clinical guidelines, comparative studies between clinical and population sets of patients, studies on cancer prognosis, and studies on cancer survivorship.
Matsuda, Ayako; Matsuda, Tomohiro; Shibata, Akiko; Katanoda, Kota; Sobue, Tomotaka; Nishimoto, Hiroshi
The Japan Cancer Surveillance Research Group aimed to estimate the cancer incidence in Japan in 2008 based on data collected from 25 of 34 population-based cancer registries, as part of the Monitoring of Cancer Incidence in Japan project. The incidence in Japan for 2008 was estimated to be 749 767 (C00-C96). Stomach cancer and breast cancer were the leading types of cancer in males and females, respectively.
Asthana, Smita; Patil, Rakshit S.; Labani, Satyanarayana
Background: Tobacco related cancers (TRC) account for major share of all cancers and updated of incidence data are helpful in policy changes. The aim was to present an update of TRCs on age-adjusted incidence data and corresponding lifetime risk of developing TRC for different regions of the country. Methods: The data for this study were obtained from published reports of 25 population-based cancer registries (PBCRs) in India. The PBCRs in different parts of India were divided into seven regions such as North, South, Central, Northeast, West, Rural West, and East. Data indicators such as age-adjusted rates (AARs) of incidence and the cumulative risks of TRCs up to the age of 64 years for each of the 10 TRC sites of either sex in each of 25 registries were obtained from the National Cancer Registry Programme reports. Results: Among all TRCs, esophagus, lung, hypopharynx, and mouth are the leading sites for both males and females. Males in Northeast region had the highest risk 1 in 27 of developing esophageal cancer, 1 in 67 for cancer of lungs and hypopharynx, followed by 1 in 143 for both mouth and tongue cancers. Females also had the highest risk of esophagus and lungs (1 in 63 female) and cancer of mouth (1 in 250) in Northeast region. Proportion of TRC in comparison of all cancer ranged from 11–25% for men and 3–18% for women. Conclusions: Proportion of TRC in relation to all cancers was still high in different registries of India including the Northeast region. PMID:27688608
Full Text Available Background: Tobacco related cancers (TRC account for major share of all cancers and updated of incidence data are helpful in policy changes. The aim was to present an update of TRCs on age-adjusted incidence data and corresponding lifetime risk of developing TRC for different regions of the country. Methods: The data for this study were obtained from published reports of 25 population-based cancer registries (PBCRs in India. The PBCRs in different parts of India were divided into seven regions such as North, South, Central, Northeast, West, Rural West, and East. Data indicators such as age-adjusted rates (AARs of incidence and the cumulative risks of TRCs up to the age of 64 years for each of the 10 TRC sites of either sex in each of 25 registries were obtained from the National Cancer Registry Programme reports. Results: Among all TRCs, esophagus, lung, hypopharynx, and mouth are the leading sites for both males and females. Males in Northeast region had the highest risk 1 in 27 of developing esophageal cancer, 1 in 67 for cancer of lungs and hypopharynx, followed by 1 in 143 for both mouth and tongue cancers. Females also had the highest risk of esophagus and lungs (1 in 63 female and cancer of mouth (1 in 250 in Northeast region. Proportion of TRC in comparison of all cancer ranged from 11–25% for men and 3–18% for women. Conclusions: Proportion of TRC in relation to all cancers was still high in different registries of India including the Northeast region.
Min, Sun Young; Kim, Zisun; Hur, Min Hee; Yoon, Chan Seok; Park, Eun-Hwa; Jung, Kyu-Won
The Korean Breast Cancer Society (KBCS) has reported a nationwide breast cancer data since 1996. We present a comprehensive report on the facts and trends of breast cancer in Korea in 2013. Data on the newly diagnosed patients in the year 2013 were collected from 99 hospitals by using nationwide questionnaire survey. Clinical characteristics such as stage of cancer, histologic types, biological markers, and surgical management were obtained from the online registry database. A total of 19,316 patients were newly diagnosed with breast cancer in 2013. The crude incidence rate of female breast cancer including carcinoma in situ was 76.2 cases per 100,000 women. The median age at diagnosis was 50 years, and the proportions of postmenopausal women with breast cancer accounted for more than half of total patients. The proportion of early breast cancer increased consistently, and the pathologic features have changed accordingly. Breast-conserving surgery was performed in more cases than total mastectomy in the year. The total number of breast reconstruction surgeries markedly increased approaching 3-fold in last 11 years. According to annual percentile change of invasive cancer incidence, the incidence increased rapidly until 2010. And thereafter the increase of it became steadier. For ductal carcinoma in situ, the incidence consistently increased during the same period without any joinpoint. Analysis of nationwide registry data will contribute to defining of the trends and characteristics of breast cancer in Korea.
booklets, color slides and flip chart prints which describe the normal anatomy and physiology of the breast, ovary, colon and prostate glands, cancer risk...Manual Appendix F Oncology Nursing Society Abstract Appendix G Flip Chart Appendix H Procedures for Implementation 1996 Appendix A Recruitment Procedures
Full Text Available Recent genome-wide studies identified a risk locus for colorectal cancer at 18q21, which maps to the SMAD7 gene. Our objective was to confirm the association between SMAD7 SNPs and colorectal cancer risk in the multi-center Colon Cancer Family Registry.23 tagging SNPs in the SMAD7 gene were genotyped among 1,592 population-based and 253 clinic-based families. The SNP-colorectal cancer associations were assessed in multivariable conditional logistic regression.Among the population-based families, both SNPs rs12953717 (odds ratio, 1.29; 95% confidence interval, 1.12-1.49, and rs11874392 (odds ratio, 0.80; 95% confidence interval, 0.70-0.92 were associated with risk of colorectal cancer. These associations were similar among the population- and the clinic-based families, though they were significant only among the former. Marginally significant differences in the SNP-colorectal cancer associations were observed by use of nonsteroidal anti-inflammatory drugs, cigarette smoking, body mass index, and history of polyps.SMAD7 SNPs were associated with colorectal cancer risk in the Colon Cancer Family Registry. There was evidence suggesting that the association between rs12953717 and colorectal cancer risk may be modified by factors such as smoking and use of nonsteroidal anti-inflammatory drugs.
Full Text Available Abstract Background Cancer risks of migrants might differ from risks of the indigenous population due to differences in socioeconomic status, life style, or genetic factors. The aim of this study was to investigate cancer patterns among children of Turkish descent in Germany. Methods We identified cases with Turkish names (as a proxy of Turkish descent among the 37,259 cases of childhood cancer registered in the German Childhood Cancer Registry (GCCR during 1980–2005. As it is not possible to obtain reference population data for children of Turkish descent, the distribution of cancer diagnoses was compared between cases of Turkish descent and all remaining (mainly German cases in the registry, using proportional cancer incidence ratios (PCIRs. Results The overall distribution of cancer diagnoses was similar in the two groups. The PCIRs in three diagnosis groups were increased for cases of Turkish descent: acute non-lymphocytic leukaemia (PCIR 1.23; CI (95% 1.02–1.47, Hodgkin's disease (1.34; 1.13–1.59 and Non-Hodgkin/Burkitt lymphoma (1.19; 1.02–1.39. Age, sex, and period of diagnosis showed no influence on the distribution of diagnoses. Conclusion No major differences were found in cancer patterns among cases of Turkish descent compared to all other cases in the GCCR. Slightly higher proportions of systemic malignant diseases indicate that analytical studies involving migrants may help investigating the causes of such cancers.
César Alejandro Berlanga Robles
Full Text Available Se clasificaron imágenes satelitales Landsat de los años 1973, 1990 y 2000 y posteriormente se realizó una comparación post-clasificatoria, con información digital complementaria, para analizar los cambios ocurridos en la cobertura vegetal y los usos del suelo de la región costa del norte de Nayarit (RCNN. Se produjeron mapas temáticos con nueve clases de cobertura y usos del terreno, con exactitudes totales > 85% y estimadores del coeficiente Kappa de 0.85 a 0.99 para las matrices de error espectral, en tanto que para el caso de las matrices de error real las exactitudes totales y Kappa fueron superiores al 87 y 0.85%, respectivamente. El análisis de las matrices de detección de cambio (1973- 1990, 1990-2000 y 1973-2000 indica que el porcentaje general de cambio en el área en estudio fue próximo al 25% entre periodos y del 30% para el periodo completo (1973-2000. En todos los casos existió una marcada tendencia al incremento de la superficie dedicada a las actividades humanas (agricultura, granjas camaronícolas y uso urbano y una disminución de las superficies con coberturas naturales como los bosques y los manglares.
Dimitrova, Nadya; Parkin, Donald Maxwell
Reporting of neoplasms in Bulgaria has been compulsory since a directive from the Ministry of Health in 1951. The quality of cancer registry data has been estimated rather infrequently in past years. We aimed to provide a comprehensive evaluation of the quality of the data at the Bulgarian National Cancer Registry (BNCR). Quantitative and semi-quantitative methods were applied for cancers diagnosed during the whole period 1993-2010, and also for cases diagnosed in 2006-2010. The methods used include historic data methods, mortality-to-incidence ratios (M:I), capture-recapture and death-certificate methods, proportions of morphologically verified cases (MV%), death-certificate-only cases (DCO%), and cases with missing information (primary site unknown, PSU%; stage unknown, SU%). The BNCR coding and classification systems follow international standards. The overall completeness was estimated at 92.6-94.7% for the period 2006-2010, with variations between cancer sites (86.7-98.5%). During the period 1993-2010, M:I decreased to 0.5 for males and 0.4 for females, MV increased to 87.4%, DCO and SU decreased to 4.8% and 18.8%, respectively, and PSU remained at the same level of about 4% for both sexes together. Sub-analysis revealed differences by site, sex and age groups. The comparison with other registries from the region showed similar incidence rates and directions of trends: M:I, MV% and DCO% that were not significantly different. The underreporting in 2008 and 2009 due to timely publication was estimated at an overall 0.8% and 0.5%, respectively. The present review showed that the BNCR yields internationally comparable data that are reasonably accurate, timely, and close to complete, especially in recent years. This is a prerequisite for the BNCR to expand its role to more areas of cancer control.
Spallek, Jacob; Arnold, Melina; Hentschel, Stefan; Razum, Oliver
The aim of this study was to estimate cancer incidence rate ratios for Turkish migrants in Hamburg, Germany. We used a name-based approach and identified 1346 cases with Turkish names (as a proxy of Turkish origin) among 140,249 cases of cancer registered in the cancer registry Hamburg during 1990-2005. To estimate the size of the denominator population, we applied the name-based approach to the population of Hamburg as well. The cancer incidence of specific cancer sites was compared between Turkish and non-Turkish cases using incidence rate ratios (IRR), stratified by gender and birth cohort. Our main findings are that cancer of the respiratory organs is diagnosed less frequent among Turkish men in older birth cohorts but with higher frequency in the younger birth cohorts. Malignant neoplasms of lymphoid, haematopoietic and related tissues are slightly higher in most male Turkish men birth cohorts, and even considerably higher for the birth cohort 1961 to <1971 (IRR=1.8). Among women, incidence rates for Turkish women are lower than for non-Turkish women for cancer of the respiratory system, skin cancer and cancer of genital organs. Also, breast cancer incidence rates of Turkish women are lower than for non-Turkish women, especially in older birth cohorts. Incidence rate ratios of neoplasms of lymphoid, haematopoietic and related tissues are low in the 1931 to <1941 cohort (IRR=0.71) but increase in younger birth cohorts. In conclusion, we found differences in cancer risks between cases with and without Turkish names for specific cancer sites. These results are consistent with the findings of studies from other countries.
Full Text Available Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA from the pathology based National Cancer Registry (1986–2006 and data on mortality (1997–2009 from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma. There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA.
Babb, Chantal; Urban, Margaret; Kielkowski, Danuta; Kellett, Patricia
Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA) from the pathology based National Cancer Registry (1986-2006) and data on mortality (1997-2009) from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR) using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma). There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA.
Babb, Chantal; Urban, Margaret; Kielkowski, Danuta; Kellett, Patricia
Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA) from the pathology based National Cancer Registry (1986–2006) and data on mortality (1997–2009) from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR) using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma). There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA. PMID:24955252
Baniasadi, Nadieh; Moghtader, Elahe; Khajehkazemi, Razieh; Mohebbi, Elham
Rates based on age-adjusted incidence of colorectal cancers over a 10-year period in Kerman, the biggest province of Iran, were estimated from 2003 to 2013. Data were obtained from the population-based cancer registry unit of Kerman University of Medical Sciences (CR-KMU). Information included age, sex, city, ICD-O and year of registry. Our trend analyses cover 3.91% of the Iranian population. The data set comprised cases diagnosed from 2003 to 2013.The population of over 20 years was interpolated using 2003 and 2010 censuses. Then, truncated age-adjusted incidence rates were calculated. Increase was noted from 2003-2009 to 2010-2013 for 731 cancer cases considered in the analysis. The increases was most prominent in 2009. Totally, the frequency of the cancer was greater in males. Moreover, calculating truncated age-adjusted incidence rate indicated that the most prevalent age of colorectal incidence was in the 50-59 year age group except in 2007-2008 and 2012- 2013, when greatest incidences occurred in people aged 60-69 years. Our data revealed that the incidence rates of colorectal cancer have increased over the past decade in our region of Iran.
Jagannath Dev Sharma
Full Text Available Background: Head and Neck cancers are basically squamous cell carcinomas. It is the fifth most common cancer and the sixth most common cause of cancer mortality in the world. Incidence of cancer as a whole for all sites is fourth highest in Kamrup Urban District (KUD in males (AAR 185.2 and second highest (AAR 156.3 in females out of all Population Based Cancer Registries (PBCR in India. Incidence of head and neck cancers in KUD is quite high both nationally and internationally. This retrospective study was carried out to assess the incidence pattern of head and neck cancers in Kamrup Urban District of Assam, India for the period of 2009-2011. Methods: Cancer is not notifiable in India, so method of collecting information on cancer was active in PBCR Guwahati. A total of 4416 cases were registered during the three years (1st January 2009- 31st December 2011 of which 2508 were male and 1908 female. Statistical analysis used: Age Adjusted Rate (AAR, Crude Rate (CR and Population pyramids are provided by NCRP-ICMR. Results: The relative proportion of head and neck cancers of total cancer cases registered in KUD constitutes 26% (654/2508 and 12% (225/1908 in male and female respectively. In males cancer of hypopharynx (AAR 14.7 was most common followed by tongue (AAR 9.4 and mouth (AAR 7.7. In females cancer of mouth (AAR 7.6 is most common followed by cancer of tongue (AAR 3.2. Conclusion: The pattern and incidence of various head and neck cancers is of utmost importance for primary prevention and early detection to adequately manage these cancers comprehensively in the community. [Int J Res Med Sci 2014; 2(4.000: 1382-1387
Full Text Available Aim: To determine the socio-demographic characteristics of cancer patients. Materials and Methods: Review of the Cancer registry, and patient interview. Information on socio-demographic profile, medical history, family history and previous treatment, if any, was retrieved from the patient. If the patient couldn′t be contacted then information was taken from pathology/radiotherapy or medical records department. Results: A total of 684 patients participated in the study. More than 40% of males and 53.7% of females were illiterate, P < 0.05. The majority (33.5% of participants were of low socioeconomic status. The most frequently reported cancer (ca in males it was ca lung (40.9 and ca oesophagus (9.8. In females most common cancer were ca breast (23.9 followed by ca cervix (11.7.
Howard L. Kaufman
Full Text Available Registries evaluating un-randomized patients have provided valuable information with respect to a therapy’s utility, treatment practices, and evolution over time. While immunotherapy for cancer has been around for more than three decades, data collection in the form of a registry has not been undertaken. The authors believe that establishing a registry to study HD IL-2 immunotherapy, which has been the only systemic therapy producing long term unmaintained remissions for advanced kidney cancer and melanoma for over 20 years, will be an important resource in understanding the impact of immunotherapy with HD IL-2 in a rapidly changing therapeutic environment. Optimizing administration and improving selection of appropriate patients likely to benefit from HD IL-2 immunotherapy are two of many benefits to be derived from this endeavor.
Full Text Available Background: Gastric cancer remains as one of the leading causes of death worldwide. In patients with gastric cancer, the survival rate after diagnosis is relatively low. The present study aimed to evaluate the impact of demographic factors in estimation of survival rate in patients with gastric cancer in order to develop updated documents in these patients. Materials and Methods: All gastric cancer patients registered in Fars cancer registry from 2001-2006 were entered in the study. Vital status of the patients was asked by telephone contact. Survival rates were estimated using Kaplan-Meier method and compared by Log-rank test. All calculations were performed using STATA (v.8 software. The p value0.05. Conclusion: Our results showed that the survival rates of gastric cancer patients in our study were relatively low. Late diagnosis and delayed therapy are important reasons for low survival in these patients. Therefore, improving public education about primary symptoms of gastric cancer by media is recommended
Higashi, Takahiro; Nakamura, Fumiaki; Shibata, Akiko; Emori, Yoshiko; Nishimoto, Hiroshi
Monitoring the current status of cancer care is essential for effective cancer control and high-quality cancer care. To address the information needs of patients and physicians in Japan, hospital-based cancer registries are operated in 397 hospitals designated as cancer care hospitals by the national government. These hospitals collect information on all cancer cases encountered in each hospital according to precisely defined coding rules. The Center for Cancer Control and Information Services at the National Cancer Center supports the management of the hospital-based cancer registry by providing training for tumor registrars and by developing and maintaining the standard software and continuing communication, which includes mailing lists, a customizable web site and site visits. Data from the cancer care hospitals are submitted annually to the Center, compiled, and distributed as the National Cancer Statistics Report. The report reveals the national profiles of patient characteristics, route to discovery, stage distribution, and first-course treatments of the five major cancers in Japan. A system designed to follow up on patient survival will soon be established. Findings from the analyses will reveal characteristics of designated cancer care hospitals nationwide and will show how characteristics of patients with cancer in Japan differ from those of patients with cancer in other countries. The database will provide an infrastructure for future clinical and health services research and will support quality measurement and improvement of cancer care. Researchers and policy-makers in Japan are encouraged to take advantage of this powerful tool to enhance cancer control and their clinical practice.
Pathy, Nirmala Bhoo; Yip, Cheng Har; Taib, Nur Aishah; Hartman, Mikael; Saxena, Nakul; Lau, Philip; Bulgiba, Awang M.; Lee, Soo Chin; Lim, Siew Eng; Wong, John E. L.; Verkooijen, Helena M.
Two hospital-based breast cancer databases (University Malaya Medical Center, Malaysia [n = 1513] and National University Hospital, Singapore [n = 2545]) were merged into a regional registry of breast cancer patients diagnosed between 1990 and 2007. A review of the data found 51% of patients diagnos
Godbole, Sheela V; Nandy, Karabi; Gauniyal, Mansi; Nalawade, Pallavi; Sane, Suvarna; Koyande, Shravani; Toyama, Joy; Hegde, Asha; Virgo, Phil; Bhatia, Kishor; Paranjape, Ramesh S; Risbud, Arun R; Mbulaiteye, Sam M; Mitsuyasu, Ronald T
We utilized computerized record-linkage methods to link HIV and cancer databases with limited unique identifiers in Pune, India, to determine feasibility of linkage and obtain preliminary estimates of cancer risk in persons living with HIV (PLHIV) as compared with the general population.Records of 32,575 PLHIV were linked to 31,754 Pune Cancer Registry records (1996-2008) using a probabilistic-matching algorithm. Cancer risk was estimated by calculating standardized incidence ratios (SIRs) in the early (4-27 months after HIV registration), late (28-60 months), and overall (4-60 months) incidence periods. Cancers diagnosed prior to or within 3 months of HIV registration were considered prevalent.Of 613 linked cancers to PLHIV, 188 were prevalent, 106 early incident, and 319 late incident. Incident cancers comprised 11.5% AIDS-defining cancers (ADCs), including cervical cancer and non-Hodgkin lymphoma (NHL), but not Kaposi sarcoma (KS), and 88.5% non-AIDS-defining cancers (NADCs). Risk for any incident cancer diagnosis in early, late, and combined periods was significantly elevated among PLHIV (SIRs: 5.6 [95% CI 4.6-6.8], 17.7 [95% CI 15.8-19.8], and 11.5 [95% CI 10-12.6], respectively). Cervical cancer risk was elevated in both incidence periods (SIRs: 9.6 [95% CI 4.8-17.2] and 22.6 [95% CI 14.3-33.9], respectively), while NHL risk was elevated only in the late incidence period (SIR: 18.0 [95% CI 9.8-30.20]). Risks for NADCs were dramatically elevated (SIR > 100) for eye-orbit, substantially (SIR > 20) for all-mouth, esophagus, breast, unspecified-leukemia, colon-rectum-anus, and other/unspecified cancers; moderately elevated (SIR > 10) for salivary gland, penis, nasopharynx, and brain-nervous system, and mildly elevated (SIR > 5) for stomach. Risks for 6 NADCs (small intestine, testis, lymphocytic leukemia, prostate, ovary, and melanoma) were not elevated and 5 cancers, including multiple myeloma not seen.Our study demonstrates the feasibility of
Full Text Available BACKGROUND: The epidemiology of neuroendocrine tumors (NETs is not well illustrated, particularly for Asian countries. METHODS: The age-standardized incidence rates and observed survival rates of NETs diagnosed in Taiwan from January 1, 1996 to December 31, 2008 were calculated using data of the Taiwan Cancer Registry (TCR and compared to those of the Norwegian Registry of Cancer (NRC and the US Surveillance, Epidemiology, and End Results (SEER program. RESULTS: During the study period, a total of 2,187 NET cases were diagnosed in Taiwan, with 62% males and a mean age of 57.9 years-old. The age-standardized incidence rate of NETs increased from 0.30 per 100,000 in 1996 to 1.51 per 100,000 in 2008. The most common primary sites were rectum (25.4%, lung and bronchus (20% and stomach (7.4%. The 5-year observed survival was 50.4% for all NETs (43.4% for men and 61.8% for women, P<0.0001. The best 5-year observed survivals for NETs by sites were rectum (80.9%, appendix (75.7%, and breast (64.8%. CONCLUSIONS: Compared to the data of Norway and the US, the age-standardized incidence rate of NETs in Taiwan is lower and the major primary sites are different, whereas the long-term outcome is similar. More studies on the pathogenesis of NETs are warranted to devise preventive strategies and improve treatment outcomes for NETs.
Kaasinen, Eevi; Aavikko, Mervi; Vahteristo, Pia; Patama, Toni; Li, Yilong; Saarinen, Silva; Kilpivaara, Outi; Pitkänen, Esa; Knekt, Paul; Laaksonen, Maarit; Artama, Miia; Lehtonen, Rainer; Aaltonen, Lauri A; Pukkala, Eero
Many cancer predisposition syndromes are rare or have incomplete penetrance, and traditional epidemiological tools are not well suited for their detection. Here we have used an approach that employs the entire population based data in the Finnish Cancer Registry (FCR) for analyzing familial aggregation of all types of cancer, in order to find evidence for previously unrecognized cancer susceptibility conditions. We performed a systematic clustering of 878,593 patients in FCR based on family name at birth, municipality of birth, and tumor type, diagnosed between years 1952 and 2011. We also estimated the familial occurrence of the tumor types using cluster score that reflects the proportion of patients belonging to the most significant clusters compared to all patients in Finland. The clustering effort identified 25,910 birth name-municipality based clusters representing 183 different tumor types characterized by topography and morphology. We produced information about familial occurrence of hundreds of tumor types, and many of the tumor types with high cluster score represented known cancer syndromes. Unexpectedly, Kaposi sarcoma (KS) also produced a very high score (cluster score 1.91, p-value <0.0001). We verified from population records that many of the KS patients forming the clusters were indeed close relatives, and identified one family with five affected individuals in two generations and several families with two first degree relatives. Our approach is unique in enabling systematic examination of a national epidemiological database to derive evidence of aberrant familial aggregation of all tumor types, both common and rare. It allowed effortless identification of families displaying features of both known as well as potentially novel cancer predisposition conditions, including striking familial aggregation of KS. Further work with high-throughput methods should elucidate the molecular basis of the potentially novel predisposition conditions found in this
Full Text Available Many cancer predisposition syndromes are rare or have incomplete penetrance, and traditional epidemiological tools are not well suited for their detection. Here we have used an approach that employs the entire population based data in the Finnish Cancer Registry (FCR for analyzing familial aggregation of all types of cancer, in order to find evidence for previously unrecognized cancer susceptibility conditions. We performed a systematic clustering of 878,593 patients in FCR based on family name at birth, municipality of birth, and tumor type, diagnosed between years 1952 and 2011. We also estimated the familial occurrence of the tumor types using cluster score that reflects the proportion of patients belonging to the most significant clusters compared to all patients in Finland. The clustering effort identified 25,910 birth name-municipality based clusters representing 183 different tumor types characterized by topography and morphology. We produced information about familial occurrence of hundreds of tumor types, and many of the tumor types with high cluster score represented known cancer syndromes. Unexpectedly, Kaposi sarcoma (KS also produced a very high score (cluster score 1.91, p-value <0.0001. We verified from population records that many of the KS patients forming the clusters were indeed close relatives, and identified one family with five affected individuals in two generations and several families with two first degree relatives. Our approach is unique in enabling systematic examination of a national epidemiological database to derive evidence of aberrant familial aggregation of all tumor types, both common and rare. It allowed effortless identification of families displaying features of both known as well as potentially novel cancer predisposition conditions, including striking familial aggregation of KS. Further work with high-throughput methods should elucidate the molecular basis of the potentially novel predisposition conditions
Renault, Anne-Laure; Lesueur, Fabienne; Coulombe, Yan; Gobeil, Stéphane; Soucy, Penny; Hamdi, Yosr; Desjardins, Sylvie; Le Calvez-Kelm, Florence; Vallée, Maxime; Voegele, Catherine; Hopper, John L.; Andrulis, Irene L.; Southey, Melissa C.; John, Esther M.; Masson, Jean-Yves; Tavtigian, Sean V.; Simard, Jacques
Approximately half of the familial aggregation of breast cancer remains unexplained. This proportion is less for early-onset disease where familial aggregation is greater, suggesting that other susceptibility genes remain to be discovered. The majority of known breast cancer susceptibility genes are involved in the DNA double-strand break repair pathway. ABRAXAS is involved in this pathway and mutations in this gene impair BRCA1 recruitment to DNA damage foci and increase cell sensitivity to ionizing radiation. Moreover, a recurrent germline mutation was reported in Finnish high-risk breast cancer families. To determine if ABRAXAS could be a breast cancer susceptibility gene in other populations, we conducted a population-based case-control mutation screening study of the coding exons and exon/intron boundaries of ABRAXAS in the Breast Cancer Family Registry. In addition to the common variant p.Asp373Asn, sixteen distinct rare variants were identified. Although no significant difference in allele frequencies between cases and controls was observed for the identified variants, two variants, p.Gly39Val and p.Thr141Ile, were shown to diminish phosphorylation of gamma-H2AX in MCF7 human breast adenocarcinoma cells, an important biomarker of DNA double-strand breaks. Overall, likely damaging or neutral variants were evenly represented among cases and controls suggesting that rare variants in ABRAXAS may explain only a small proportion of hereditary breast cancer. PMID:27270457
Wada, Keita; Takaori, Kyoichi; Traverso, L William; Hruban, Ralph H; Furukawa, Toru; Brentnall, Teresa A; Hatori, Takashi; Sano, Keiji; Takada, Tadahiro; Majima, Yoshiyuki; Shimosegawa, Tooru
Pancreatic cancer is still a highly lethal disease with a 5-year survival rate of approximately 5 %. Early detection offers one of the best hopes for improving survival. Previous cohort studies and case-control studies showed that 4-10 % of pancreatic cancers have a hereditary basis, and individuals with a family history have an increased risk of developing pancreatic and extra-pancreatic malignancies. Since individuals with a family history of pancreatic cancer and those with a known genetic syndrome that predisposes to pancreatic cancer will be the first to benefit from early detection tests as they become available, familial pancreatic cancer (FPC) registries have been established in the US and Europe, but not yet in Japan. Such registries form the basis for epidemiological studies, clinical trials, and basic research on familial pancreatic cancer. There is a need for FPC registries in Japan as cancer risk varies among different populations and discoveries made in Western populations may not translate to the Japanese population. These registries in Japan will align with ongoing international efforts and add to a better understanding of the natural history, risk factors, screening strategies, and responsible genes, for improving survival of this dismal disease.
M A Wani
Full Text Available Background: An assessment of cancer incidence in population is required for prevention, early diagnosis, treatment and resource allocation. This will also guide in the formation of facilities for diagnosis, treatment, rehabilitation and follow-up for these patients. The demographic trend of cancer will help to identify common types and etiological factors. Efforts at clinical, research and administrative levels are needed to overcome this problem. Settings and Design: Present retro prospective study was conducted in regional cancer center of a tertiary care hospital. Materials and Methods: After permission from ethics committee, a retro prospective study of 1 year duration was undertaken to study the profile of cancer patients and to compare it with other cancer registries in India. Statistical Analysis: Pearson′s Chi-square test and simple linear regression were used. Statistical Package for the Social Sciences version-16 (University of Bristol information services (www.bristol.ac.uk/is/learning/resources was used. RESULTS: The overall incidence of cancer in Kashmir is on the increase and common sites of cancer are esophagus and gastroesophageal (GE junction, lung, stomach, colorectal, lymphomas, skin, laryngopharynx, acute leukemias, prostate and brain in males.In females common sites are breast, esophagus and GE junction, ovary, colorectal, stomach, lung, gallbladder, lymphomas, acute leukemias and brain. Conclusion: Cancers of esophagus, stomach and lungs have a high incidence both in men and women in Kashmir. Future studies on sources and types of environmental pollution and exposures in relation to these cancers may improve our understanding of risk factors held responsible for causation of these malignancies in this region. This will help in the allocation of available resources for prevention and treatment strategies.
Keegan, Theresa H.M.; Lichtensztajn, Daphne Y.; Kato, Ikuko; Kent, Erin E.; Wu, Xiao-Cheng; West, Michelle M.; Hamilton, Ann S.; Zebrack, Brad; Bellizzi, Keith M.; Smith, Ashley W.
Purpose We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. Methods We studied 523 AYAs recruited from 7 population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma in 2007-08. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. Results More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-White race/ethnicity, and participants who reported less than excellent general health, or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥ 3 physical treatment-related symptoms. Conclusions Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. Implications for Cancer Survivors We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals. PMID:22457219
Graf, R; Grüntzig, K; Boo, G; Hässig, M; Axhausen, K W; Fabrikant, S; Welle, M; Meier, D; Guscetti, F; Folkers, G; Otto, V; Pospischil, A
Cancer registries are valuable sources for epidemiological research investigating risk factors underlying different types of cancer incidence. The present study is based on the Swiss Feline Cancer Registry that comprises 51,322 feline patient records, compiled between 1965 and 2008. In these records, 18,375 tumours were reported. The study analyses the influence of sex, neutering status, breed, time and age on the development of the most common tumour types and on their locations, using a multiple logistic regression model. The largest differences between breeds were found in the development of fibrosarcomas and squamous cell carcinomas, as well as in the development of tumours in the skin/subcutis and mammary gland. Differences, although often small, in sex and neutering status were observed in most analyses. Tumours were more frequent in middle-aged and older cats. The sample size allowed detailed analyses of the influence of sex, neutering status, breed and age. Results of the study are mainly consistent with previous analyses; however, some results cannot be compared with the existing literature. Further investigations are necessary, since feline tumours have not been investigated in depth to date. More accurate comparisons would require the definition of international standards for animal cancer registries.
Bhatia, Jay K.; Metzger, Daniel; Ashamalla, Hani; Katsoulakis, Evangelia
Purpose Breast cancer subtype correlates with response to systemic therapy and overall survival (OS), but its impact on lymphatic spread is incompletely understood. In this study, we used the Surveillance, Epidemiology, and End Results registry to assess whether the subtype can predict the presence of nodal metastasis or advanced nodal stage in breast cancer. Methods A total of 7,274 eligible patients diagnosed with T1-3 infiltrating ductal carcinoma with known estrogen or progesterone hormone receptor (HR) and human epidermal growth factor receptor 2 (HER2) status, who underwent surgical excision of the primary tumor and pathologic lymph node evaluation, were included in this analysis. Patients were categorized into four breast cancer subtypes: HR+/HER2-; HR+/HER2+; HR-/HER2+; and HR-/HER2-. Binary logistic regression analysis was used to determine whether breast cancer subtype, tumor size, tumor grade, patient race, and patient age at diagnosis are independently predictive of lymph node positivity or advanced nodal stage. The Pearson chi-square test was used to determine whether progesterone receptor (PR) status had an impact on the incidence of lymph node positivity in estrogen receptor (ER) positive patients. Results Independent predictors of nodal positivity included breast cancer subtype (p=0.040), tumor size (p<0.001), tumor grade (p<0.001), and patient age (p<0.001), whereas only tumor size (p<0.001), grade (p=0.001), and patient age (p=0.005) predicted advanced nodal stage. Triple-negative cancers had a significantly lower risk of nodal positivity than the HR+/HER2- subtype (odds ratio, 0.686; p=0.004), but no other significant differences between subtypes were observed. There was also no difference in lymph node positivity between PR+ and PR- tumors amongst ER+/HER2- (p=0.228) or ER+/HER2+ tumors (p=0.713). Conclusion The HR+/HER2-breast cancer subtype has a higher rate of lymph node involvement at diagnosis than the triple-negative subtype. These
Bartsch, Rupert; Mlineritsch, Brigitte; Gnant, Michael; Niernberger, Thomas; Pluschnig, Ursula; Greil, Richard; Wenzel, Catharina; Sevelda, Paul; Thaler, Josef; Rudas, Margaretha; Pober, Michael; Zielinski, Christoph C.; Steger, Guenther G.
Abstract Background Endocrine therapy is the preferred treatment in oestrogen- and/or progesterone-receptor (ER/PgR) positive breast cancer. Fulvestrant is a pure ER-antagonist. We present results from the Austrian Fulvestrant Registry. Methods Three-hundred and fifty patients were included. Time to progression (TTP) was defined as primary endpoint. A multivariate analysis was performed to identify factors significantly associated with TTP. ...
Full Text Available Aska Drljevic,1 Michael Borre,2 Morten Høyer,3 Vera Ehrenstein,4 Mary Nguyen-Nielsen4 1Department of Pharmacology, 2Department of Urology, 3Department of Oncology, 4Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Background and aim: It is well established that cancer patients have an increased risk of venous thromboembolism (VTE. However, no previous study has examined the quality of VTE diagnoses related to cancer patients in the Danish National Registry of Patients (DNRP. To support future studies on cancer and risk of VTE, this study aimed to estimate the positive predictive value (PPV of VTE diagnoses among prostate cancer (PC patients registered in the DNRP. Materials and methods: We conducted a validation study using data from hospitals within the Central Denmark Region, which covers a population of 1.3 million people. Using the DNRP, we identified a total of 120 PC patients registered with VTE within the period 1995–2012. We also identified a random sample of 120 PC patients with no VTE registration within the same period. Therefore, a total of 240 patients were selected for medical chart review. We compared data from the DNRP to data collected from medical record review (ie, reference standard. We then computed PPV, sensitivity, and specificity with corresponding 95% confidence intervals (CIs using the Jeffreys method. Results: The final study sample included 232 PC patients, of which 115 were registered with VTE and 117 had no registration of VTE in the DNRP. We found the overall PPV of VTE diagnoses in the DNRP to be 86.1% (95% CI 78.9%–91.5%. Sensitivity was 98.0% (95% CI 93.8%–99.6%, and specificity was 87.8% (95% CI 81.4%–92.6%. We also found the PPV of incident PC diagnoses in the DNRP to be 98.3% (95% CI 96.1%–99.4%. Conclusion: For PC patients, the registration of VTE diagnoses in the DNRP is associated with a high PPV. We provide evidence that data from the DNRP are valid for studies
Full Text Available Adenosquamous carcinoma (ASC is a rare disease involving various organs, yet there are no large-scale population-based comparative studies on ASC among different organs.The incidence and overall survival of ASC among various organs in cases diagnosed in Taiwan from January 1, 2003 to December 31, 2010 were calculated and compared using data from the Taiwan Cancer Registry (TCR. The various organs were classified and divided into three different systems: the female reproductive, respiratory, and alimentary systems. Survival analysis were also compared among 30,850 patients diagnosed as ASC, adenocarcinoma (AC or squamous cell carcinoma (SCC in organs with frequent ASC.During the study period, a total of 576 ASC cases were diagnosed in Taiwan. The most common primary system was respiratory (73.8%, followed by alimentary (16.2% and female reproductive (10%. The overall survival were significantly higher for cases involving the female reproductive system, followed by the respiratory and alimentary systems (P = 0.016. The median overall survival were worse in males than females for cases involving the respiratory system (22.4 vs. 31.8 months, P = 0.044. Multivariate analysis showed that age ≧ 65, more advanced T and N categories were independent unfavorable prognostic factors of overall survival in ASC. ASC histology is an independent unfavorable prognostic factor compared with AC and SCC.ASC at an old age and more advanced T and N categories were found to be associated with a poor prognosis.
Erika Eliana Meza Durán
Full Text Available Cancer is one of the most common chronic diseases that cause high morbidity and mortality. In the evaluation of all illnessand its impact on the community, a surveillance system becomes necessary to allows us to know its incidence. Cancersurveillance is achieved by the population-based cancer registry. Methodology: The Population Based Cancer Registry ofMetropolitan Area of Bucaramanga (RPC-AMB collected information from the years 2000 to 2004, in patients with anymalignant cancer the which include both invasive and in situ behavior in addition to reside within this geographical area . TheCancer Registry also collects data on brain and nervous system tumors classified as benign or those that have uncertainbehavior. Basal cell cancers of the skin were included during the two first years as well as all the intraepithelial neoplasm ofthe cervix. Active collections of information at all sources by registry staff were made (Hospitals, Health care institutions,especially oncology centers and Pathology and Hematology Laboratories and some specialist in oncology attention. Theinclusion approaches are verified and collects data on specific sociodemographic information (age, gender, residence, placeof birth, etc. and on the anatomic site of the tumor, the cell type of the cancer, behavior and extension on each individualdiagnosed with cancer. Each case was coded using the International Classification of Diseases Oncology Third Edition (ICDO-3, for topographical and morphological code. The data was entered into a computer with CanReg-4 software that is aconfigurable computer program designed for cancer registration in population-based registries and was provided as aservice by the Descriptive Epidemiology Unit to members of the International Association of Cancer Registries. This softwareprovides the number of cancer cases (frequency and the incidence rates. The quality control included exhaustiveness of thecases and information, verification of the
Leinonen, Maarit K; Rantanen, Matti; Pitkäniemi, Janne; Malila, Nea
Background Registration of haematological malignancies presents specific challenges, and a wide range of data is required to ensure case ascertainment and proper classification of these diseases. We studied the data quality of myeloproliferative and myelodysplastic neoplasms in the Finnish Cancer Registry (FCR), comparing information with hospital discharges. Material and methods Hospital discharges (HILMO) in 2007-2013 including diagnostic codes of myeloproliferative and myelodysplastic neoplasms were extracted. Patients were individually linked to the FCR database for all haematological malignancies registered in 1953-2013. Coverage and accuracy of the FCR and agreement between registers was estimated. Results In total 5289 individuals were retrieved from two registers. Of these, 1406 were common, 1080 only found in the FCR and 2803 only in the HILMO. Coverage of myeloproliferative and myelodysplastic neoplasms in the FCR was 47.0% (95% CI 45.7-48.4%). Almost one quarter of the registrations in the FCR was based on a death certificate only. The accuracy of diagnosis was 51.4% (95% CI 49.4-53.3%), but it varied substantially by disease category. Kappa statistic for agreement between registers was excellent (0.83, 95% CI 0.80-0.85) for common cases. 7.6% of cases in the HILMO was registered as leukaemias in the FCR. Conclusions More than half of the patients found in the HILMO were entirely missing from the FCR. However, some of the diagnoses in HILMO may be preliminary and this represents the maximal number of missing cases. Cancer registers benefit from supplementary data sources, such as hospital discharges, to increase coverage and accuracy of register data on haematological malignancies.
Eva Bjerre Ostenfeld, Eva Bjerre; Froeslev, Trine; Friis, Soren; Gandrup,; Madsen,; SÃ¸gaard,Mette
Eva Bjerre Ostenfeld,1,2 Trine Frøslev,1 Søren Friis,3 Per Gandrup,2 Mogens Rørbæk Madsen,4 Mette Søgaard1,51Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; 2Department of Surgery A, Aarhus University Hospital, Aalborg, Denmark; 3Danish Cancer Society Research Center, Danish Cancer Society, Copenhagen, Denmark; 4Department of Surgery A, Herning Regional Hospital, Herning, Denmark; 5Department of Clinical M...
Comba, P; Crocetti, E; Buzzoni, C; Fazzo, L; Ferretti, S; Fusco, M; Iavarone, I; Pirastu, R; Ricci, P
The collaborative study between Istituto superiore di sanità and Associazione italiana registri tumori (ISS-AIRTUM) aims at investigating cancer incidence in polluted sites for adults and for children (0-14 years) and adolescents (15-19 years) to comment the study results in the light of a set of a priori hypotheses. On the whole, 141 out of 298 municipalities included in SENTIERI Project are served by a Cancer Register participating to the AIRTUM network. For a description of SENTIERI, refer to the 2010 Supplement of Epidemiology & Prevention devoted to SENTIERI Project. The time window of the study is the period 1996-2005. The number of expected cases in each polluted site will be estimated by applying incidence rates of the national pool of cancer registries and of the pool of the geographic macroarea in which each site is located: Northern, Central, Southern Italy and Islands. Cancer incidence in children and adolescents is one of the main priorities of international public health institutions, because of the need to protect childhood health from involuntary exposure to environmental risk factors. Standardized incidence ratios (SIRs) will be computed using expected figures derived from the national pool of cancer registries.
U.S. Department of Health & Human Services — The Nanomaterial Registry compiles data from multiple databases into a single resource. The goal of this resource is to establish a curated nanomaterial registry,...
Full Text Available Abstract Background Several DNA mismatch repair (MMR genes, responsible for the majority of Lynch Syndrome cancers, have been identified, predominantly MLH1 and MSH2, but the risk associated with these mutations is still not well established. The aim of this study is to provide population-based estimates of the risks of colorectal cancer (CRC by gender and mutation type from the Ontario population. Methods We analyzed 32 families segregating MMR mutations selected from the Ontario Familial Colorectal Cancer Registry and including 199 first-degree and 421 second-degree relatives. The cumulative risks were estimated using a modified segregation-based approach, which allows correction for the ascertainment of the Lynch Syndrome families and permits account to be taken for missing genotype information. Results The risks of developing CRC by age 70 were 60% and 47% among men and women carriers of any MMR mutation, respectively. Among MLH1 mutation carriers, males had significantly higher risks than females at all ages (67% vs. 35% by age 70, p-value = 0.02, while the risks were similar in MSH2 carriers (about 54%. The relative risk associated with MLH1 was almost constant with age (hazard ratio (HR varied between 5.5-5.1 over age 30–70, while the HR for MSH2 decreased with age (from 13.1 at age 30 to 5.4 at age 70. Conclusion This study provides a unique population-based study of CRC risks among MSH2/MLH1 mutation carriers in a Canadian population and can help to better define and understand the patterns of risks among members of Lynch Syndrome families.
Brønden, L B; Nielsen, S S; Toft, N; Kristensen, A T
From May 15, 2005 to April 15, 2008, 1878 cases of neoplasms in dogs were reported to the web-based Danish Veterinary Cancer Registry. The proportions of malignant (38 per cent) and benign (45 per cent) tumours were similar. The most common malignant neoplasms were adenocarcinomas (21 per cent), mast cell tumours (19 per cent) and lymphomas (17 per cent). The benign neoplasms most commonly encountered were lipomas (24 per cent), adenomas (22 per cent) and histiocytomas (14 per cent). Skin (43 per cent) and the female reproductive system including mammary tissue (28 per cent) were the most common locations of neoplasia. There was a distinct breed predisposition for tumour development, with a high standard morbidity ratio (indicating a higher risk of cancer) for boxers and Bernese mountain dogs. A standard morbidity ratio below 1 was observed in German shepherd dogs and Danish/Swedish farm dogs, suggesting a lower risk of cancer in these breeds.
De Silva, Daswin; De Silva, M.V.C.; Ranasinghe, Tamra I J; Lawrentschuk, Nathan; Bolton, Damien; Persad, Raj
Purpose To investigate the incidence of bladder cancer (BC) in Sri Lanka and to compare risk factors and outcomes with those of other South Asian nations and South Asian migrants to the United Kingdom (UK) and the United States (US). Materials and Methods The incidence of BC in Sri Lanka was examined by using two separate cancer registry databases over a 5-year period. Smoking rates were compiled by using a population-based survey from 2001 to 2009 and the relative risk was calculated by using published data. Results A total of 637 new cases of BC were diagnosed over the 5-year period. Sri Lankan BC incidence increased from 1985 but remained low (1.36 and 0.3 per 100,000 in males and females) and was similar to the incidence in other South Asian countries. The incidence was lower, however, than in migrant populations in the US and the UK. In densely populated districts of Sri Lanka, these rates almost doubled. Urothelial carcinoma accounted for 72%. The prevalence of male smokers in Sri Lanka was 39%, whereas Pakistan had higher smoking rates with a 6-fold increase in BC. Conclusions Sri Lankan BC incidence was low, similar to other South Asian countries (apart from Pakistan), but the actual incidence is likely higher than the cancer registry rates. Smoking is likely to be the main risk factor for BC. Possible under-reporting in rural areas could account for the low rates of BC in Sri Lanka. Any genetic or environmental protective effects of BC in South Asians seem to be lost on migration to the UK or the US and with higher levels of smoking, as seen in Pakistan. PMID:22670188
Brenner, H; Stegmaier, C; Ziegler, H
This paper provides projections of incident cases of malignant neoplasms in Saarland, Germany, between 1988 and 2002. The analyses are based on population forecasts by the National Statistical Office and on age-cohort analyses of cancer incidence data from the population-based cancer registry of the Saarland. Due to dramatic demographic changes and increasing age-specific cancer incidence rates, the average yearly number of total incident cases of malignant neoplasms is projected to increase by 63.1% between 1983-1987 and 1998-2002 in men, with the strongest increase projected for colon cancer (+114.6%). In women, a modest increase (+7.1%) is projected for all malignant neoplasms, with stronger increases for colon cancer (+50.1%), lung cancer (+44%) and breast cancer (+27.4%), whereas decreasing annual numbers of cases are projected for cervical cancer (-51.6%), stomach cancer (-18.5%) and endometrial cancer (-10.2%). The results provide a quantitative basis for health care planning in the Saarland. They may also serve as a rough guide for other parts of Germany for which reliable cancer incidence data are not available.
Ehrenstein, Vera; Gammelager, Henrik; Schiødt, Morten;
PURPOSE: This study aimed to validate a predefined algorithm for osteonecrosis of the jaw (ONJ) among cancer patients in the Danish National Registry of Patients and to assess the nature of clinical information recorded in medical charts of ONJ patients. METHODS: We identified potential ONJ cases...
M.W.J. Louwman (Marieke)
markdownabstract__Abstract__ Breast cancer is the most frequent cancer among women in the Netherlands, and it is the most important cause of cancer death. Between age 35 and 55 about 20% of all deaths among women is due to breast cancer.1 The age-standardised incidence rate is among the highest in
van Spronsen, D J; Janssen-Heijnen, M L G; Lemmens, V E P P; Peters, W G; Coebergh, J W W
The prevalence of co-morbidity among elderly lymphoma patients is associated with a decrease in the use of chemotherapy. This study assessed the independent prognostic effect of co-morbidity in 1551 unselected lymphoma patients, diagnosed between 1995 and 2001 in the area of the population-based Eindhoven Cancer Registry. The prevalence of serious co-morbidity was 58% for patients with Hodgkin's disease (HD) who were over 60 years of age and 66% for patients with non-Hodgkin's lymphoma (NHL) who were over 60 years of age. The administration of chemotherapy declined in the presence of co-morbidity for elderly patients with early-stage HD and elderly patients with aggressive NHL. Co-morbidity was associated with a 10-20% decline in 5-year survival. Whether less frequent application of chemotherapy in the presence of co-morbidity is justified as far as complications, prognosis and quality of life are concerned requires further investigation.
Trujillo-Santos, Javier; Di Micco, Pierpaolo; Iannuzzo, Mariateresa; Lecumberri, Ramón; Guijarro, Ricardo; Madridano, Olga; Monreal, Manuel
A significant association between elevated white blood cell (WBC) count and mortality in patients with cancer has been reported, but the predictive value of elevated WBC on mortality in cancer patients with acute venous thromboembolism (VTE) has not been explored. RIETE is an ongoing registry of consecutive patients with acute VTE. We compared the three-month outcome of cancer patients with acute VTE according to their WBC count at baseline. As of May 2007, 3805 patients with active cancer and acute VTE had been enrolled in RIETE. Of them, 215 (5.7%) had low- (11,000 cells/microl) WBC count. During the study period 190 patients (5.0%) had recurrent VTE, 156 (4.1%) major bleeding, 889 (23%) died (399 of disseminated cancer, 113 of PE, 46 of bleeding. Patients with elevated WBC count at baseline had an increased incidence of recurrent VTE (odds ratio [OR]: 1.6; 95% confidence interval [CI]: 1.2-2.2), major bleeding (OR: 1.5; 95% CI: 1.1-2.1) or death (OR: 2.7; 95% CI: 2.3-3.2). Most of the reported causes of death were significantly more frequent in patients with elevated WBC count. Multivariate analysis confirmed that elevated WBC count was independently associated with an increased incidence of all three complications. In conclusion, cancer patients with acute VTE and elevated WBC count had an increased incidence of VTE recurrences, major bleeding or death. This worse outcome was consistent among all subgroups and persisted after multivariate adjustment.
Béchade, Clémence; Dejardin, Olivier; Bara, Simona; Bouvier, Véronique; Guizard, Anne-Valérie; De Mil, Rémy; Troussard, Xavier; Lobbedez, Thierry; Launoy, Guy
Aims To estimate the incidence of chronic dialysis in patients with a history of cancer and assess how renal replacement therapy is initiated in this population. Methods We merged data from cancer registries and hospital databases in one French region to identify patients with an incident cancer between 2001 and 2008 who started chronic dialysis. Results Mean participation time was 3.4 ± 2.7 years. Males comprised 58.5 % of participants. During the study period, 74 chronic dialysis treatments were initiated. Chronic interstitial nephritis was the leading cause of end-stage renal disease (21.6 %), and 46.6 % of dialysis initiation cases were unplanned. The incidence rate of chronic dialysis initiation in the population of incident cancer patients was 370 per million population/year (74 events/199,809 person-years). After age-adjustment, the standardized incidence ratio was 1.26, 95 % confidence interval 0.98-1.57, p = 0.55. Conclusion Cancer patients are known to be at risk of chronic kidney disease. However, the standardized incidence ratio of chronic dialysis initiation did not differ significantly between cancer patients and the general population. Further studies should be performed to identify the barriers to starting renal replacement therapy in cancer patients.
Drummond, F J; Kinnear, H; Donnelly, C; O'Leary, E; O'Brien, K; Burns, R M; Gavin, A; Sharp, L
Objective To establish an international patient-reported outcomes (PROMs) study among prostate cancer survivors, up to 18 years postdiagnosis, in two countries with different healthcare systems and ethical frameworks. Design A cross-sectional, postal survey of prostate cancer survivors sampled and recruited via two population-based cancer registries. Healthcare professionals (HCPs) evaluated patients for eligibility to participate. Questionnaires contained validated instruments to assess health-related quality of life and psychological well-being, including QLQ-C30, QLQ-PR25, EQ-5D-5L, 21-question Depression, Anxiety and Stress Scale (DASS-21) and the Decisional Regret Scale. Setting Republic of Ireland (RoI) and Northern Ireland (NI). Primary outcome measures Registration completeness, predictors of eligibility and response, data missingness, unweighted and weighted PROMs. Results Prostate cancer registration was 80% (95% CI 75% to 84%) and 91% (95% CI 89% to 93%) complete 2 years postdiagnosis in NI and RoI, respectively. Of 12 322 survivors sampled from registries, 53% (n=6559) were classified as eligible following HCP screening. In the multivariate analysis, significant predictors of eligibility were: being ≤59 years of age at diagnosis (p<0.001), short-term survivor (<5 years postdiagnosis; p<0.001) and from RoI (p<0.001). 3348 completed the questionnaire, yielding a 54% adjusted response rate. 13% of men or their families called the study freephone with queries for assistance with questionnaire completion or to talk about their experience. Significant predictors of response in multivariate analysis were: being ≤59 years at diagnosis (p<0.001) and from RoI (p=0.016). Mean number of missing questions in validated instruments ranged from 0.12 (SD 0.71; EQ-5D-5L) to 3.72 (SD 6.30; QLQ-PR25). Weighted and unweighted mean EQ-5D-5L, QLQ-C30 and QLQ-PR25 scores were similar, as were the weighted and unweighted prevalences of depression, anxiety and
Lacson, Ronilda; Harris, Kimberly; Brawarsky, Phyllis; Tosteson, Tor D; Onega, Tracy; Tosteson, Anna N A; Kaye, Abby; Gonzalez, Irina; Birdwell, Robyn; Haas, Jennifer S
Breast cancer screening is central to early breast cancer detection. Identifying and monitoring process measures for screening is a focus of the National Cancer Institute's Population-based Research Optimizing Screening through Personalized Regimens (PROSPR) initiative, which requires participating centers to report structured data across the cancer screening continuum. We evaluate the accuracy of automated information extraction of imaging findings from radiology reports, which are available as unstructured text. We present prevalence estimates of imaging findings for breast imaging received by women who obtained care in a primary care network participating in PROSPR (n = 139,953 radiology reports) and compared automatically extracted data elements to a "gold standard" based on manual review for a validation sample of 941 randomly selected radiology reports, including mammograms, digital breast tomosynthesis, ultrasound, and magnetic resonance imaging (MRI). The prevalence of imaging findings vary by data element and modality (e.g., suspicious calcification noted in 2.6% of screening mammograms, 12.1% of diagnostic mammograms, and 9.4% of tomosynthesis exams). In the validation sample, the accuracy of identifying imaging findings, including suspicious calcifications, masses, and architectural distortion (on mammogram and tomosynthesis); masses, cysts, non-mass enhancement, and enhancing foci (on MRI); and masses and cysts (on ultrasound), range from 0.8 to1.0 for recall, precision, and F-measure. Information extraction tools can be used for accurate documentation of imaging findings as structured data elements from text reports for a variety of breast imaging modalities. These data can be used to populate screening registries to help elucidate more effective breast cancer screening processes.
Full Text Available Malene Schou Nielsson,1 Rune Erichsen,1 Trine Frøslev,1 Aliki Taylor,2 John Acquavella,2 Vera Ehrenstein11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; 2Center for Observational Research International, Amgen Ltd Thousand Oaks, CA, USA Background: The purpose of this study was to estimate the positive predictive value (PPV of the coding for bisphosphonate treatment in selected cancer patients from the Danish National Patient Registry (DNPR.Methods: Through the DNPR, we identified all patients with recorded cancer of the breast, prostate, lung, kidney, and with multiple myeloma. We restricted the study sample to patients with bisphosphonate treatment recorded during an admission to Aalborg Hospital, Denmark, from 2005 through 2009. We retrieved and reviewed medical records of these patients from the initial cancer diagnosis onwards to confirm or rule out bisphosphonate therapy. We calculated the PPV of the treatment coding as the proportion of patients with confirmed bisphosphonate treatment.Results: We retrieved and reviewed the medical records of 60 cancer patients with treatment codes corresponding to bisphosphonate therapy. Recorded code corresponded to treatment administered intravenously for 59 of 60 patients, corresponding to a PPV of 98.3% (95% confidence interval 92.5–99.8. In the remaining patient, bisphosphonate treatment was also confirmed but was an orally administered bisphosphonate; thus, the treatment for any bisphosphonate regardless of administration was confirmed for all 60 patients (PPV of 100%, 95% confidence interval 95.9–100.0.Conclusion: The PPV of bisphosphonate treatment coding among cancer patients in the DNPR is very high and the recorded treatment nearly always corresponds to intravenous administration.Keywords: bisphosphonate, neoplasm metastases, predictive value of tests, validation studies
Owen, Jason E; Bantum, Erin O'Carroll; Criswell, Kevin; Bazzo, Julie; Gorlick, Amanda; Stanton, Annette L
Internet interventions often rely on convenience sampling, yet convenience samples may differ in important ways from systematic recruitment approaches. The purpose of this study was to evaluate potential demographic, medical, and psychosocial differences between Internet-recruited and registry-recruited cancer survivors in an Internet-based intervention. Participants were recruited from a cancer registry (n = 80) and via broad Internet outreach efforts (n = 160). Participants completed a set of self-report questionnaires, and both samples were compared to a population-based sample of cancer survivors (n = 5,150). The Internet sample was younger, better educated, more likely to be female, had longer time since diagnosis, and had more advanced stage of disease (p's convenience and systematic samples differ has important implications for external validity and potential for dissemination of Internet-based interventions.
Li Rita Zhang
Full Text Available Background. Few prospective studies have examined associations between breast cancer worry and screening behaviours in women with elevated breast cancer risks based on family history. Methods. This study included 901 high familial risk women, aged 23–71 years, from the Ontario site of the Breast Cancer Family Registry. Self-reported breast screening behaviours at year-one followup were compared between women at low (N=305, medium (N=433, and high (N=163 levels of baseline breast cancer worry using logistic regression. Nonlinear relationships were assessed using likelihood ratio tests. Results. A significant non-linear inverted “U” relationship was observed between breast cancer worry and mammography screening (P=0.034 for all women, where women at either low or high worry levels were less likely than those at medium to have a screening mammogram. A similar significant non-linear inverted “U” relationship was also found among all women and women at low familial risk for worry and screening clinical breast examinations (CBEs. Conclusions. Medium levels of cancer worries predicted higher rates of screening mammography and CBE among high-risk women.
Full Text Available Vera Ehrenstein,1 Rohini K Hernandez,2 Merete Lund Maegbaek,1 Johnny Kahlert,1 Mary Nguyen-Nielsen,1 Mette Nørgaard,1 Alexander Liede2 1Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; 2Center for Observational Research, Amgen, Thousand Oaks, CA, USA Objective: Among patients with prostate cancer, diagnostic codes for bone metastases in the Danish National Registry of Patients have a sensitivity of 44%. In an attempt to improve the sensitivity of registry-based identification of metastases from prostate cancer, we tested a series of algorithms, combining elevated prostate-specific antigen (PSA levels, use of antiresorptive therapy, and performed bone scintigraphy. Patients and methods: We randomly selected 212 men diagnosed with prostate cancer in 2005–2010 in the Central Denmark Region with prespecified PSA values, antiresorptive therapy, and bone scintigraphy who did not have a registry-based diagnostic code indicating presence of distant metastases. We defined three candidate algorithms for bone metastases: 1 PSA >50 µg/L and bone scintigraphy, 2 PSA >50 µg/L and antiresorptive therapy, and 3 PSA ≤50 µg/L with antiresorptive therapy or bone scintigraphy. An algorithm for distant metastasis site other than bone was defined as PSA >50 µg/L alone. Medical chart review was used as the reference standard to establish the presence or absence of metastases. Validity was expressed as a positive predictive value (PPV or a negative predictive value, based on whether the algorithms correctly classified metastases compared with the reference standard. Results: We identified 113 men with evidence of metastases according to the candidate algorithms, and 99 men without evidence of metastases according to the candidate algorithm. The PPVs of PSA >50 µg/L were 0.10 (95% confidence interval [CI] 0.04–0.19 for bone metastases and 0.14 (95% CI 0.07–0.24 for nonbone metastases, regardless of receipt of antiresorptive
Grüntzig, K; Graf, R; Hässig, M; Welle, M; Meier, D; Lott, G; Erni, D; Schenker, N S; Guscetti, F; Boo, G; Axhausen, K; Fabrikant, S; Folkers, G; Pospischil, A
Diagnostic records are a key feature of any cancer epidemiology, prevention or control strategy for man and animals. Therefore, the information stored in human and animal cancer registries is essential for undertaking comparative epidemiological, pathogenic and therapeutic research. This study presents the Swiss Canine Cancer Registry, containing case data compiled between 1955 and 2008. The data consist of pathology diagnostic records issued by three veterinary diagnostic laboratories in Switzerland. The tumours were classified according to the guidelines of the International Classification of Oncology for Humans on the basis of tumour type, malignancy and body location. The dogs were classified according to breed, age, sex, neuter status and place of residence. The diagnostic data were correlated with data on the Swiss general dog population and the incidence of cancer in dogs was thus investigated. A total of 67,943 tumours were diagnosed in 121,963 dogs and 47.07% of these were malignant. The most common tumour location was the skin (37.05%), followed by mammary glands (23.55%) and soft tissue (13.66%). The most common tumour diagnoses were epithelial (38.45%), mesenchymal (35.10%) and lymphoid tumours (13.23%). The results are compared with data in other canine registries and similarities in tumour distribution and incidence are noted. It is hoped that this study will mark the beginning of continuous registration of dog tumours in Switzerland, which, in turn, will serve as a reference for research in the fields of animal and human oncology.
Kawai, Masaaki; Tomotaki, Ai; Miyata, Hiroaki; Iwamoto, Takayuki; Niikura, Naoki; Anan, Keisei; Hayashi, Naoki; Aogi, Kenjiro; Ishida, Takanori; Masuoka, Hideji; Iijima, Kotaro; Masuda, Shinobu; Tsugawa, Koichiro; Kinoshita, Takayuki; Nakamura, Seigo; Tokuda, Yutaka
Few studies have reported the association between body mass index (BMI) and outcome among Asian breast cancer patients. We analyzed data for 20,090 female invasive breast cancer patients who had been followed-up for a median period of 6.7 years entered in the National Clinical Database-Breast Cancer Registry between 2004 and 2006. We used mainly the WHO criteria for BMI (kg/m(2) ) categories; cause, 937 breast cancer-specific deaths, and 2433 recurrences were observed. Obesity was associated with an increased risk of all-cause (HR: 1.46; 95% CI: 1.16-1.83) and breast cancer-specific death (HR: 1.47; 95% CI: 1.11-1.93) for all patients, and with all-cause (HR: 1.47; 95% CI: 1.13-1.92) and breast cancer-specific death (HR: 1.58; 95% CI: 1.13-2.20) for postmenopausal patients. Being underweight was associated with an increased risk of all-cause death for all (HR: 1.41; 95% CI: 1.16-1.71) and for postmenopausal patients (HR: 1.45; 95% CI: 1.15-1.84). With regard to subtype and menopausal status, obesity was associated with an increased risk of breast cancer-specific death for all cases of luminal B tumor (HR: 2.59; 95% CI: 1.51-4.43; Pheterogeneity of Luminal B vs. Triple negative = 0.016) and for postmenopausal patients with luminal B tumor (HR: 3.24; 95% CI: 1.71-6.17). Being obese or underweight is associated with a higher risk of death among female breast cancer patients in Japan.
Full Text Available Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, United Kingdom; 2Ministry of Health, General Directorate of Health Affairs Al-Baha, Kingdom of Saudi Arabia; 3Lincoln Hospital, Research and Development, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, United Kingdom Background: This study presents descriptive epidemiological data related to breast cancer cases diagnosed from 2001 to 2008 among Saudi women, including the frequency and percentage of cases, the crude incidence rate (CIR, and the age-standardized incidence rate (ASIR, adjusted by the region and year of diagnosis. Methods: This is a retrospective descriptive epidemiological study of all Saudi female breast cancer cases from 2001 to 2008. The statistical analyses were conducted using descriptive statistics, a linear regression model, and analysis of variance with the Statistical Package for the Social Sciences version 20 (IBM Corporation, Armonk, NY, USA. Results: A total of 6,922 female breast cancer cases were recorded in the Saudi Cancer Registry from 2001 to 2008. The highest overall percentages (38.6% and 31.2% of female breast cancer cases were documented in women who were 30–44 and 45–59 years of age, respectively. The eastern region of Saudi Arabia had the highest overall ASIR, at 26.6 per 100,000 women, followed by Riyadh at 20.5 and Makkah at 19.4. Jazan, Baha, and Asir had the lowest average ASIRs, at 4.8, 6.1, and 7.3 per 100,000 women, respectively. The region of Jouf (24.2%; CIR 11.2, ASIR 17.2 had the highest changes in CIR and ASIR from 2001 to 2008. While Qassim, Jazan and Tabuk recorded down-trending rates with negative values. Conclusion: There was a significant increase in the CIRs and ASIRs for female breast cancer between 2001 and 2008. The majority of breast cancer cases occurred among younger women. The region of Jouf had the greatest significant
0100 (SWOG 8814 ) trial. In this trial, 1,477 postmenopausal breast cancer patients were random ised to Tamoxifen, chemotherapy plus Tamoxifen (CAFT-T...results from intergroup trial 0100(SWOG- 8814 ). Proc. Am. Soc. Clin. Oncol 2002;21. (66) Osborne CK, Kitten L, Arteaga CL: Antagonism of chemotherapy...indicated, p=.Ol); OS similar 8313  Node (+), Yes, main 531(11%) No (1984-1990) HR (-) trial report 8814  Postmenopa Yes, follow- 1,558(9
Full Text Available Evidence about distribution patterns of brain metastases with regard to breast cancer subtypes and its influence on the prognosis of patients is insufficient. Clinical data, cranial computed tomography (CT and magnetic resonance imaging (MRI scans of 300 breast cancer patients with brain metastases (BMs were collected retrospectively in four centers participating in the Brain Metastases in Breast Cancer Registry (BMBC in Germany. Patients with positive estrogen (ER, progesterone (PR, or human epidermal growth factor receptor 2 (HER2 statuses, had a significantly lower number of BMs at diagnosis. Concerning the treatment mode, HER2-positive patients treated with trastuzumab before the diagnosis of BMs showed a lower number of intracranial metastases (p < 0.001. Patients with a HER2-positive tumor-subtype developed cerebellar metastases more often compared with HER2-negative patients (59.8% vs. 44.5%, p = 0.021, whereas patients with triple-negative primary tumors had leptomeningeal disease more often (31.4% vs. 18.3%, p = 0.038. The localization of Brain metastases (BMs was associated with prognosis: patients with leptomeningeal disease had shorter survival compared with patients without signs of leptomeningeal disease (median survival 3 vs. 5 months, p = 0.025. A shorter survival could also be observed in the patients with metastases in the occipital lobe (median survival 3 vs. 5 months, p = 0.012. Our findings suggest a different tumor cell homing to different brain regions depending on subtype and treatment.
Snyder, Denise Clutter; Sloane, Richard; Lobach, David; Lipkus, Isaac M.; Peterson, Bercedis; Kraus, William; Demark-Wahnefried, Wendy
Participant accrual to research studies is a challenge, and oftentimes advertisements are used to supplement cases ascertained through clinic caseloads and cancer registries. It is unknown however, if cases ascertained through these two sources differ. In this study, we compare self-referred (n=209) versus cancer registry-ascertained participants (n=334) enrolled in FRESH START, a randomized controlled trial promoting a healthy diet and increased exercise among breast and prostate cancer survivors. The two groups were compared on baseline characteristics, adherence, attrition, and outcomes by study arm. Compared to participants enrolled from registries, self-referrals were significantly younger (54.1±10.4 vs. 58.7±10.7 years), more likely to have later-staged disease and to have received chemotherapy (40% vs. 19%), and more likely to report “fighting spirit” coping styles (50% vs. 30%), lower quality-of-life (88.2+15.1 vs. 92.0+12.9), fewer co-morbid conditions (1.87±1.60 vs. 2.24±1.78), and lower consumption of 5 or more daily servings of fruits and vegetables (35% vs. 45%)(p-values <.05). While no differences in behavior change were observed between self-referred and registry-ascertained cases assigned to the tailored intervention arm, this was not the case within the attention control arm. Among those who received the attention control intervention of standardized materials in the public domain, self-referred versus registry-ascertained participants demonstrated significantly greater increases in exercise at 1-year follow-up, and significantly greater increases in fruit and vegetable consumption at both 1- and 2-year follow-up (p-values <.05). Several differences exist between self-referred versus registry-ascertained participants, including motivation to respond to standardized educational materials which appears significantly greater in self-referred populations. PMID:18483353
Kristensen Annemarie T
Full Text Available Abstract Background Head and neck cancers (HNC are relatively common and often very serious diseases in both dogs and humans. Neoplasms originating in the head and neck region are a heterogeneous group. HNC often has an unfavourable prognosis and the proximity of the tissue structures renders extirpation of tumours with sufficient margins almost incompatible with preservation of functionality. In humans oral malignant melanoma (OMM is extremely rare, but represents a particular challenge since it is highly aggressive as is the canine counterpart, which thus may be of interest as a spontaneous animal model. Methods Canine cases entered in the Danish Veterinary Cancer Registry (DVCR from May 15th 2005 through February 29th 2008 were included in this study. Fisher's exact test was used to compare proportions of HNC in dogs and humans as well as proportions of surgically treated cases of OMM and squamous cell carcinomas (SCC. Also the proportions of benign and malignant neoplasms of different locations in dogs were compared using Fisher's exact test. Results A total of 1768 cases of neoplasias (679 malignant, 826 benign, 263 unknown were submitted. Of all neoplasias HNC accounted for 7.2% (n = 128. Of these, 64 (50% were malignant and 44 (34% benign. The most common types of malignant neoplasia were SCC (18; 28% of malignant, OMM (13; 20% of malignant, soft tissue sarcoma (11; 17% of malignant and adenocarcinoma (5; 11% of malignant. The most common types of benign neoplasms were adenoma (7; 16% of benign, polyps (6; 14% of benign and fibroma (5; 11% of benign. Conclusions In the current study, the proportion of neoplasia in the head and neck region in dogs in Denmark was similar to other canine studies and significantly more common than in humans with a large proportion of malignancies. Spontaneous HNC in dogs thus, may serve as a model for HNC in humans. Canine OMM is a spontaneous cancer in an outbred, immune-competent large mammal population and
Full Text Available Thyroid cancer (TC, the most common endocrine tumor, has steadily increased worldwide due to the increase of the papillary histotype. The reasons for this spread have not been established. In addition to more sensitive thyroid nodule screening, the effect of environmental factors cannot be excluded. Because high incidences of TC were found in volcanic areas (Hawaii and Iceland, a volcanic environment may play a role in the pathogenesis of TC.In January 2002, the Regional Register for Thyroid Cancer was instituted in Sicily. With a population of approximately 5 million inhabitants with similar genetic and lifestyle features, the coexistence in Sicily of rural, urban, industrial, moderate-to-low iodine intake and volcanic areas provides a conducive setting for assessing the environmental influences on the etiology of TC.In Sicily, between 2002 and 2004, 1,950 new cases of TC were identified, with an age-standardized rate (world ASR(w=17.8/100000 in females and 3.7/100000 in males and a high female/male ratio (4.3:1.0. The incidence of TC was heterogeneous within Sicily. There were 2.3 times more cases in the Catania province (where most of the inhabitants live in the volcanic area of Mt. Etna: ASR(w=31.7/105 in females and 6.4/105 in males vs 14.1 in females and 3.0 in males in the rest of Sicily. Multivariate analysis documented that residents in the volcanic area of Mt. Etna had a higher risk of TC, compared to the residents in urban, industrial and iodine deficient areas of Sicily. An abnormally high concentration of several chemicals was found in the drinking water of the Mt. Etna aquifer, which provides water to most of the residents in the Catania province. Our data suggest that environmental carcinogen(s of volcanic origin may promote papillary TC. Additional analyses, including cancer biological and molecular features, will allow a better understanding of risk factors and etiopathogenetic mechanisms.
Bhugwandass, C.S.; Pijnenborg, J.M.A.; Pijlman, B.; Ezendam, N.P.M.
Background There is wide variation in the application of adjuvant chemotherapy in early-stage epithelial ovarian cancer. Our aim was to assess differences in health-related quality of life (hrqol) between patients with early-stage ovarian cancer who did or did not receive chemotherapy as adjuvant treatment. Methods All patients diagnosed with early-stage ovarian cancer between 2000 and 2010 within the population-based Eindhoven Cancer Registry (n = 191) were enrolled in this study. Patients were requested to complete questionnaires, including the cancer-specific (qlq-C30) and ovarian cancer-specific (qlq-OV28) quality of life measures from the European Organisation for Research and Treatment of Cancer. Primary outcome measures were the generic-and cancer-specific domain scores for hrqol in ovarian cancer survivors. Results Of the 107 patients (56%) who returned the questionnaires, 57 (53.3%) had received adjuvant chemotherapy and 50 (46.7%) had been treated with surgery alone. Significant differences in hrqol between those groups were found in the symptom scales for peripheral neuropathy, attitude toward sickness, and financial situation, with worse scores in the chemotherapy group. Conclusions Results of our study show that patients who receive adjuvant chemotherapy have a significantly worse score for 3 aspects of hrqol. Efforts should be made to reduce use of adjuvant chemotherapy in early-stage ovarian cancer. Moreover, preventive strategies to improve long-term quality of life for those who need adjuvant chemotherapy should be explored. PMID:28050144
Trends and variations in breast and colorectal cancer incidence from 1995 to 2011: a comparative study between Texas Cancer Registry and National Cancer Institute's Surveillance, Epidemiology and End Results data.
Liu, Zheyu; Zhang, Yefei; Franzin, Luisa; Cormier, Janice N; Chan, Wenyaw; Xu, Hua; Du, Xianglin L
Few studies have examined the cancer incidence trends in the state of Texas, and no study has ever been conducted to compare the temporal trends of breast and colorectal cancer incidence in Texas with those of the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) in the United States. This study aimed to conduct a parallel comparison between the Texas Cancer Registry and the National Cancer Institute's SEER on cancer incidence from 1995 to 2011. A total of 951,899 breast and colorectal cancer patients were included. Age-adjusted breast cancer incidence was 134.74 per 100,000 in Texas and 131.78 per 100,000 in SEER in 1995-2011, whereas age-adjusted colorectal cancer incidence was 50.52 per 100,000 in Texas and 49.44 per 100,000 in SEER. Breast cancer incidence increased from 1995 to 2001, decreased from 2002 to 2006, and then remained relatively stable from 2007 to 2011. For colorectal cancer, the incidence increased in 1995-1997, and then decreased continuously from 1998 to 2011 in Texas and SEER areas. Incidence rates and relative risks by age, gender and ethnicity were identical between Texas and SEER.
will be necessary to carry out studies concerning the causes of cancer in children. Due to the little that is known about the incidence of cancer in Mexican children, it will be necessary to develop a national program to establish a cancer registry for the whole of the country.
Keegan, Theresa H M; Milne, Roger L; Andrulis, Irene L; Chang, Ellen T; Sangaramoorthy, Meera; Phillips, Kelly-Anne; Giles, Graham G; Goodwin, Pamela J; Apicella, Carmel; Hopper, John L; Whittemore, Alice S; John, Esther M
Few studies have considered the joint association of body mass index (BMI) and physical activity, two modifiable factors, with all-cause mortality after breast cancer diagnosis. Women diagnosed with invasive breast cancer (n = 4,153) between 1991 and 2000 were enrolled in the Breast Cancer Family Registry through population-based sampling in Northern California, USA; Ontario, Canada; and Melbourne and Sydney, Australia. During a median follow-up of 7.8 years, 725 deaths occurred. Baseline questionnaires assessed moderate and vigorous recreational physical activity and BMI prior to diagnosis. Associations with all-cause mortality were assessed using Cox proportional hazards regression, adjusting for established prognostic factors. Compared with no physical activity, any recreational activity during the 3 years prior to diagnosis was associated with a 34% lower risk of death [hazard ratio (HR) = 0.66, 95% confidence interval (CI): 0.51-0.85] for women with estrogen receptor (ER)-positive tumors, but not those with ER-negative tumors; this association did not appear to differ by race/ethnicity or BMI. Lifetime physical activity was not associated with all-cause mortality. BMI was positively associated with all-cause mortality for women diagnosed at age > or =50 years with ER-positive tumors (compared with normal-weight women, HR for overweight = 1.39, 95% CI: 0.90-2.15; HR for obese = 1.77, 95% CI: 1.11-2.82). BMI associations did not appear to differ by race/ethnicity. Our findings suggest that physical activity and BMI exert independent effects on overall mortality after breast cancer.
Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...
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Smith, Brittney L; Ramadan, Mohamed; Corley, Brittany; Hablas, Ahmed; Seifeldein, Ibrahim A; Soliman, Amr S
The purpose of this study was to describe and quantify procedures and methods that maximized the efficiency of the Gharbiah Cancer Registry (GPCR), the only population-based cancer registry in Egypt. The procedures and measures included a locally-developed software program to translate names from Arabic to English, a new national ID number for demographic and occupational information, and linkage of cancer cases to new electronic mortality records of the Ministry of Health. Data was compiled from the 34,058 cases from the registry for the years 1999-2007. Cases and registry variables about demographic and clinical information were reviewed by year to assess trends associated with each new method or procedure during the study period. The introduction of the name translation software in conjunction with other demographic variables increased the identification of detected duplicates from 23.4% to 78.1%. Use of the national ID increased the proportion of cases with occupation information from 27% to 89%. Records with complete mortality information increased from 18% to 43%. Proportion of cases that came from death certificate only, decreased from 9.8% to 4.7%. Overall, the study revealed that introducing and utilizing local and culture-specific methodological changes, software, and electronic non-cancer databases had a significant impact on data quality and completeness. This study may have translational implications for improving the quality of cancer registries in LMICs considering the emerging advances in electronic databases and utilization of health software and computerization of data.
Roshandel, Gholamreza; Sadjadi, Alireza; Aarabi, Mohsen; Keshtkar, Abbasali; Sedaghat, Seyed Mehdi; Nouraie, Seyed Mehdi; Semnani, Shahryar; Malekzadeh, Reza
Background: Golestan Province, at the western end of the Asian esophageal cancer (EC) belt in northeastern Iran, was reported to have one of the highest worldwide rates of EC in the 1970s. We have previously shown a declining incidence of EC in Golestan during the last decades. This study reports ad
Department of Veterans Affairs — The Converged Registries platform is a hardware and software architecture designed to host individual patient registries and eliminate duplicative development effort...
Humberto Reyes Hernández
Full Text Available El objetivo de este trabajo es identificar los cambios en la cobertura y uso del suelo derivados de la puesta en marcha del proyecto de riego Pujal-Coy, en el oriente del estado de San Luis Potosí, México. El estudio se basa en la interpretación y análisis de imágenes de satélite Landsat MSS y ETM+, documentos oficiales e históricos del proyecto de riego y trabajo de campo. Los resultados indican que durante la etapa inicial del proyecto más de 73 000 ha de selva baja espinosa, selva baja caducifolia y selva mediana subperennifolia fueron desmontadas. La tasa de deforestación calculada para este período fue del 11% anual. Actualmente, sólo persisten poco menos de 11 000 ha de selva en fragmentos con diferente grado de perturbación, dispersos en los tres municipios potosinos incluidos en el proyecto. La proporción del área ocupada por praderas pasó del 21% en 1973 a más del 64% en el 2000, mientras que las áreas cultivadas mantienen prácticamente la misma superficie marginal que tenían al inicio del proyecto. Estos datos evidencian el retorno inequívoco de la ganadería extensiva, que se pretendía sustituir con agricultura intensiva, y los altos costos ambientales que tuvo el proyecto.
Revisiting the Surveillance Epidemiology and End Results Cancer Registry and Medicare Health Outcomes Survey (SEER-MHOS) Linked Data Resource for Patient-Reported Outcomes Research in Older Adults with Cancer.
Kent, Erin E; Malinoff, Rochelle; Rozjabek, Heather M; Ambs, Anita; Clauser, Steven B; Topor, Marie A; Yuan, Gigi; Burroughs, James; Rodgers, Anne B; DeMichele, Kimberly
Researchers and clinicians are increasingly recognizing the value of patient-reported outcome (PRO) data to better characterize people's health and experiences with illness and care. Considering the rising prevalence of cancer in adults aged 65 and older, PRO data are particularly relevant for older adults with cancer, who often require complex cancer care and have additional comorbid conditions. A data linkage between the Surveillance Epidemiology and End Results (SEER) cancer registry and the Medicare Health Outcomes Survey (MHOS) was created through a partnership between the National Cancer Institute and the Centers for Medicare and Medicaid Services that created the opportunity to examine PROs in Medicare Advantage enrollees with and without cancer. The December 2013 linkage of SEER-MHOS data included the linked data for 12 cohorts, bringing the number of individuals in the linked data set to 95,723 with cancer and 1,510,127 without. This article reviews the features of the resource and provides information on some descriptive characteristics of the individuals in the data set (health-related quality of life, body mass index, fall risk management, number of unhealthy days in the past month). Individuals without (n=258,108) and with (n=3,440) cancer (1,311 men with prostate cancer, 982 women with breast cancer, 689 with colorectal cancer, 458 with lung cancer) were included in the current descriptive analysis. Given increasing longevity, advances in effective therapies and earlier detection, and population growth, the number of individuals aged 65 and older with cancer is expected to reach more than 12 million by 2020. SEER-MHOS provides population-level, self-reported, cancer registry-linked data for person-centered surveillance research on this growing population.
Mohseninejad, Leyla; van Gils, Chantal; Uyl-de Groot, Carin A.; Buskens, Erik; Feenstra, Talitha
Background: Access with evidence development has been established for expensive intramural drugs in The Netherlands. The procedure involves a 4-year period of conditional reimbursement. During this period, additional evidence has to be gathered usually through a patient registry. Given the costs and
Rane, Pallavi B; Madhavan, S Suresh; Sambamoorthi, Usha; Sita, Kalidindi; Kurian, Sobha; Pan, Xiaoyun
The aim was to examine and compare with "national" estimates, receipt of colorectal cancer (CRC) treatment in the initial phase of care and survival following a CRC diagnosis in rural Medicare beneficiaries. A retrospective study was conducted on fee-for-service Medicare beneficiaries diagnosed with CRC in 2003-2006, identified from West Virginia Cancer Registry (WVCR)-Medicare linked database (N = 2119). A comparative cohort was identified from Surveillance, Epidemiology, and End Results (SEER)-Medicare (N = 38,168). CRC treatment received was ascertained from beneficiaries' Medicare claims in the 12 months post CRC diagnosis or until death, whichever happened first. Receipt of minimally appropriate CRC treatment (MACT) was defined using recommended CRC treatment guidelines. All-cause and CRC-specific mortality in the 36-month period post CRC diagnosis were examined. Differences in usage of CRC surgery, chemotherapy, and radiation were observed between the 2 populations, with those from WVCR-Medicare being less likely to receive any type of CRC surgery (adjusted odds ratio [AOR] = 0.82; 95% confidence interval [CI] = [0.73-0.93]). Overall, those from WVCR-Medicare had a lower likelihood of receiving MACT, (AOR = 0.85; 95% CI = [0.76-0.96]) compared to their national counterparts. Higher hazard of CRC mortality was observed in the WVCR-Medicare cohort (adjusted hazard ratio = 1.26; 95% CI = [1.20-1.32]) compared to the SEER-Medicare cohort. Although more beneficiaries from WVCR-Medicare were diagnosed in early-stage CRC compared to their SEER-Medicare counterparts, they had a lower likelihood of receiving MACT and a higher hazard of CRC mortality. This study highlights the need for an increased focus on improving access to care at every phase of the CRC care continuum, especially for those from rural settings.
V M Patil
Full Text Available Background: There is deficit of data from India on elderly patients with cancer. Comprehensive geriatric assessment may lead to a better decision making capacity in this population. However, routine implementation of such assessment is resource consuming. Aim: The aim of this study was to determine the patterns of care in elderly patients treated at a tertiary rural cancer center in India. Materials And Methods: All patients with age 70 or above with solid tumors without any definitive treatment prior to the registration at our center and registered between 01/01/2010 and 31/12/2011 were selected for this study. The baseline demographic pattern and the pattern of care of treatment were analyzed. SPSS version 16 (IBM Inc, Armonk, New York, U.S. was used for analysis. Descriptive data are provided. Results: A total of 761 patients were evaluable subject to the aforementioned inclusion criteria. The median age of this cohort was 75 years (70-95 years. The most frequent primary sites of malignancies in 451 males were head neck (32.4%, lung (23.3% and gastrointestinal (23.3%. In 310 females, the most common sites were head neck (31.6%, gynecological (18.4% and gastrointestinal (24.5%. 228 (30% of the patients had localized disease, 376 (49.4% had loco-regionally advanced disease and 145 (19.1% had distant metastases at presentation. 334 (46.32% of patients were treated with curative intent. On logistic regression analysis the factors that predicted use of curative intent treatment were age <75 years, performance status 0-1, primary site and clinical extent of disease. Conclusion: Routine comprehensive geriatric assessment needs to be implemented in our setting as almost 50% of our geriatric patients undergo curative intent treatment.
刘杰; 朱丽萍; 杨旭丽; 李艾; 吉路; 赵军
[Purpose] To investigate female cancer epidemic status in cancer registries in Jiangxi province, and to provide reference for local cancer control and prevention. [Methods]The cancer data from 2009 to 2011 in cancer registries of Jiangxi province were analyzed. The cancer incidence, standardized incidence rate and cumulative rate were analyzed. [ Results ]The female crude cancer incidence in cancer registries of Jiangxi province was 141.04/105,the age-standardized incidence by Chinese population was 86.64/105,and age-standardized incidence by World population was 111.23/105,cumulative incidence rate (0～74 years) was 12.40%. The female cancer incidence in urban areas was higher than that in rural areas . The top 5 common cancers in urban was breast cancer,lung cancer,colon & rectum cancer,stomach cancer and cervix cancer. Lung cancer was the leading cause of cancer incidence in female in rural areas,followed by stomach cancer, breast cancer,liver cancer and colon cancer. [Conclusion] Cancer prevention and control in female in Jiangxi province should put emphasis on breast cancer,lung cancer,digestive system cancer and cervix cancer.%[目的]了解江西省肿瘤登记地区女性居民恶性肿瘤报告发病情况,为女性居民恶性肿瘤防控策略提供参考.[方法]对江西省肿瘤登记地区2009～2011年女性恶性肿瘤发病数据进行分析,计算女性主要肿瘤的发病率、标化率、顺位、累积率和截缩率等指标.[结果]江西省肿瘤登记地区女性居民恶性肿瘤粗发病率为141.04/10万,中标率为86.64/10万,世标率为111.23/10万,0～74岁累积发病率为12.40％.城市女性恶性肿瘤发病率高于农村.乳腺癌是城市女性居民恶性肿瘤发病首位原因,其次为肺癌、结直肠癌、胃癌和宫颈癌.肺癌位居农村地区女性居民发病首位,其次为胃癌、乳腺癌、肝癌和结直肠癌.[结论]乳腺癌、肺癌、消化系统恶性肿瘤及宫颈癌应成为江西省女性居民恶性肿瘤防控的重点.
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Grid services are the fundamental building blocks of today's Distributed Computing Infrastructures (DCI). The discovery of services in the DCI is a primary function that is a precursor to other tasks such as workload and data management. In this context, a service registry can be used to fulfil such a requirement. Existing service registries, such as the ARC Information Index or UNICORE Registry, are examples that have proven themselves in production environments. Such implementations provide a centralized service registry, however, todays DCIs, such as EGI, are based on a federation model. It is therefore necessary for the service registry to mirror such a model in order for it to seamlessly fit into the operational and management requirements - a DCI built using federated approach. This document presents an architecture for a federated service registry and a prototype based on this architecture, the EMI Registry. Special attention is given to how the federated service registry is robust to environment failu...
Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: The electronic Patient-reported Outcomes from Cancer Survivors (ePOCS system
Full Text Available Abstract Background Cancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service. Methods/Design Non-metastatic breast, colorectal and prostate cancer patients (largest survivor groups, within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore
Clemente, C; Orazi, A; Rilke, F
After a review of the incidence data on malignant soft-tissue tumors in Italy (Registro dei Tumori della Regione Lombardia, provincia di Varese), Europe (nine European Cancer Registries considered representative of various geographical areas) and extra-European countries (data of ten World Cancer Registries), the aim and the organization of the Italian Malignant Soft-Tissue Tumor Registry are described. The collection system is based on dedicated forms prepared for the computerization of all data. From 1.1.1985 to 31.3.1987, 207 cases of malignant and potentially malignant soft-tissue tumors entered the Registry, with exclusion of those sarcomas arising in viscera. The distribution, categorized by histologic type, sex and site, and the preliminary results on relapses and metastases are reported.
H.W. Nab (Henk)
textabstractIndirect evidence forms the basis of our knowledge of the natural history of human breast cancer. It is assumed that breast cancer starts by subtle molecular changes within a cell, called the induction phase, leading to the creation of a malignant cell. This phase is followed by multipli
M.P.P. van Herk-Sukel (Myrthe)
textabstractIn the Netherlands, breast cancer is the most frequent (30%) of all cancers in women. In 2008, around 13,000 women were newly diagnosed with the disease. Worldwide, breast cancer accounted for almost 1.4 million new cancer patients in 20082. Incidence rates of breast cancer have been inc
Demleitner, Markus; Sidaner, Pierre Le; Plante, Raymond L
In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources -- typically, data and services -- that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention comm...
Demleitner, M.; Greene, G.; Le Sidaner, P.; Plante, R. L.
In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources-typically, data and services-that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention common usage patterns and open issues as appropriate.
Mouridsen, H.T.; Bjerre, K.D.; Christiansen, Peter
were registered in the DBCG Database. Since 1977 the prognosis has improved significantly, thus 5 year survival for the total population of patients with primary breast cancer has increased from 65 to 81%. DISCUSSION: According to the present analysis diagnosis at an earlier stage in the natural course......INTRODUCTION: Since 30 years DBCG (Danish Breast Cancer Coperative Group) has maintained, on a nation-wide basis, a clinical database of diagnostic procedures, therapeutic interventions, and clinical outcome in patients with primary breast cancer. The present analysis was undertaken to evaluate...... the development of the prognosis since 1977, and to analyse factors potentially contributing to the change of the prognosis. MATERIAL AND METHODS: All cases of invasive breast cancer reported to DBCG during the period 1977-2006 were included in the present analysis. RESULTS: A total of close to 80 000 patients...
Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten;
AIM OF DATABASE: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). STUDY POPULATION: The registry...... patients is currently 90%. MAIN VARIABLES AND DESCRIPTIVE DATA: Approximately, 250 AML patients, 25 ALL patients, and 230 MDS patients are registered in the DNLR every year. In January 2015, the registry included detailed patient characteristics, disease characteristics, treatment characteristics...... years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...
U.S. Environmental Protection Agency — The Facility Registry Service (FRS) provides an integrated source of comprehensive (air, water, and waste) environmental information about facilities across EPA,...
Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J;
BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completen......BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database...
Oliveira, Patricia Pereira Vasconcelos de; Silva, Gulnar Azevedo e; Curado, Maria Paula; Malta, Deborah Carvalho; Moura, Lenildo de
This study assessed the reliability of cancer as the underlying cause of death using probabilistic linkage between the Mortality Information System and Population-Based Cancer Registry (PBCR) in Goiânia, Goiás State, Brazil, from 2000 to 2005. RecLink III was used for probabilistic linkage, and reliability was assessed by Cohen's kappa and prevalence-adjusted and bias-adjusted kappa (PABAK). In the probabilistic linkage, 2,874 individuals were identified for the reliability analysis. Cohen's kappa ranged from 0.336 to 0.846 and PABAK from 0.810 to 0.990 for 14 neoplasm groups defined in the study. For reliability of the 35 leading cancers, 12(34.3%) presented kappa values under 0.600 and PABAK over 0.981. Among the neoplasms common to both sexes, crude agreement ranged from 0.672 to 0.790 and adjusted agreement from 0.894 to 0.961. Sixty-seven percent of cases classified by the Mortality Information System as "cancer of ill-defined sites" were reclassified according to the PBCR. This study was useful for the classification of cancer mortality estimates in areas covered by the PBCR.
Ito, Hidemi; Matsuo, Keitaro; Tanaka, Hideo; Koestler, Devin C; Ombao, Hernando; Fulton, John; Shibata, Akiko; Fujita, Manabu; Sugiyama, Hiromi; Soda, Midori; Sobue, Tomotaka; Mor, Vincent
Shifts in the histologic type of lung cancer accompanying changes in lung cancer incidence have been observed in Japan and the United States. We examined the association between the shift in tobacco design from nonfilter to filter cigarettes with changes in the incidence of adenocarcinoma (AD) and squamous cell carcinoma (SQ) of the lung. We compiled population-based incidence data from the Surveillance, Epidemiology and End Results in the United States (1973-2005) and from selected Japanese cancer registries (1975-2003). Trends in age-standardized rates of lung cancer incidence by histologic type were characterized using joinpoint analyses. A multiple regression framework was used to examine the relationship between tobacco use and incidence by histologic type. We observed that AD has replaced SQ as the most frequent histologic type in males and females in both Japan and the United States. Filter cigarette consumption was positively associated with the incidence of AD, with time lags of 25 and 15 years in Japan and the United States, respectively ( beta(2)(AD)): 1.946 × 10(-3) , p consumption was positively associated with the incidence of SQ, with time lags of 30 and 20 years in Japan and the United States, respectively (beta (SQ)(2) ): 0.464 × 10(-3) , p = 0.006 and 0.364 × 10(-3) , p = 0.008). In conclusion, the shift from nonfilter to filter cigarettes appears to have merely altered the most frequent type of lung cancer, from SQ to AD.
Montazeri, Ali; Jarvandi, Soghra; Ebrahimi, Mandana; Haghighat, Shahpar; Ansari, Mariam
Although controversial, the belief that developing breast cancer may be associated with psychological distress is not uncommon. The present study examined the role of psychological variables in the development of breast cancer in women attending a breast clinic for medical examination in Tehran, Iran. During a three-year period (1997-1999) a trained female nurse interviewed all women attending the Iranian Center for Breast Cancer (ICBC) before a confirmed diagnosis was made (N = 3000). Data were collected on demographic variables (age, education and marital status), known risk factors (age at menarche, age at first time full term pregnancy, family history of breast cancer, menopausal status, and oral contraceptive use), psychological variables, including history of psychiatric medications, depression (depressed mood, hopelessness, and loss of interests and pleasures), anxiety (mental and somatic signs) and two single measures of overall health and quality of life. In all, 243 patients were diagnosed as having breast cancer. A total of 486 patients with benign disease were randomly selected from the original cohort as controls. Univariate and multivariate logistic regression analyses were performed to determine the predictive effect of each factor on the risk of breast cancer. There were no significant differences between cases and controls except for age at menarche (P = 0.007) and family history of breast cancer (P<0.001). With regard to psychological variables studied, the results showed that there were significant differences between cases and controls regarding depression (depressed mood P<0.0001, hopelessness P = 0.001, and loss of interest and pleasures P = 0.001), and anxiety (mental signs P = 0.006). Finally, after performing multiple logistic regression analysis in addition to family history and age at menarche, depressed mood and hopelessness showed significant results (odds ratios of 1.90, and 1.63 respectively). The findings of the present study suggest
Memon, S.; Szigeti, G.; Field, L.
This documents describes the overall development plan of the EMI Registry product, the plan focuses on the realisation of the EMI Registry specification as defined in the document. It is understood that during the course of the development phase the specification will likely evolve and the changes will be fed into the specification document.
雷涛; 毛伟敏; 杨红健; 陈晓钟; 雷通海; 汪祥辉; 应倩; 陈万青; 张思维
目的 探讨中国恶性肿瘤发病特点及时间趋势.方法 采用中国城乡11个市县肿瘤登记处的1988-2002年资料进行统计与分析,描述恶性肿瘤发病现状,研究其时间趋势与发病特点.结果 11个市县肿瘤登记处覆盖地区15年内新发恶性肿瘤695 050例,粗发病率为215.50/10万,世界标准人口调整发病率为170.97/10万.主要恶性肿瘤发病率排序依次为肺癌、胃癌、肝癌、食管癌、乳腺癌、结肠癌、直肠癌、胰腺癌、膀胱癌、白血病.16种主要恶性肿瘤占全部的85.56%.1988-2002年恶性肿瘤合并的粗发病率呈较快上升趋势.按部位分析,增幅最大的是前列腺癌(185.48%),其次为胆囊癌、乳腺癌、结肠癌等.发病率下降幅度最大的是宫颈癌(17.00%),其次为食管癌、胃癌、鼻咽癌.结论 中国11个市县1988-2002年恶性肿瘤总的粗发病率呈上升趋势,调整年龄因素后变化不明显.胰腺癌、膀胱癌、白血病已进入前10位,成为常见恶性肿瘤.前列腺癌和胆囊癌发病率虽然较低,但是增长幅度最大.%Objective Aim of this paper was to explore the trend and characteristics of cancer incidence in 11 areas (5 cities and 6 counties) in China. Methods Data from cancer registries during 1988 to 2002 collected from the 11 cancer registry points were used to analyze the trends and characteristics of cancer incidence rates. Results There were 695 050 newly developed cancer cases in this study. The crude rate of incidence and the world age-adjusted incidence were 215.50/10~5 and 170.97/10~5 respectively. The leading cancer sites were lung, stomach, liver, esophagus, breast, colon, rectum, pancreas, bladder and leukemia. The sixteen key cancers accounted for 85.56% of all the cancer cases. The crude incidence rate of all cancers had been significantly increased from 1988 to 2002. Among them, prostate (185.48%) ranked the fastest growing one followed by cancers of the gallbladder, breast, colon
郑荣寿; 张思维; 吴良有; 李光琳; 赵平; 赫捷; 陈万青
[Purpose] To investigate the cancer incidence and mortality in cancer registration areas in 2008. [ Methods ] After checking and evaluating the cancer registry data in 2008 from 56 cancer registries, of them 41 registries' data were selected for this analysis. We classified cancer registries into two categories: urban and rural. Incidence and mortality rates,age-specific rates,age-standardized rates,proportions,cumulative rates were calculated. [Results] The population coverage of all 41 registries were 66 138 784 (52 158 495 in urban areas and 13 980 289 in rural areas). The total cancer incident cases and deaths were 197 833 and 122 136,respectively with mortality to incidence rate ratio of 0.62. The morphological verified rate was 69.33% and 2.23% of cases were identified by death certificate only. The crude cancer incidence in registration areas was 299.12/105(330.16/105 in male and 267.56/105 in female) and age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) were 148.75/105 and 194.99/105,respectively with cumulative incidence rate (0~74 age years old) of 22.27%. Both of crude and adjusted incidence rates in urban areas were higher than that in rural areas. The crude cancer mortality was 184.67/105 (228.14/105 in male, 140.48/105 in female),and age-standardized mortality rates by Chinese standard population (ASMRC) and by world population were 84.36/105 and 114.32/105 respectively with cumulative mortality rate (0~74 age years old) of 12.89%. Age-adjusted mortality rates in urban areas were lower than that in rural areas. The top ten commonest cancer types were lung, stomach, colorectum, liver, esophagus , pancreas, brain, lymphoma, breast and cervix, accounting for 75% of all cancer incidence in registration areas. Lung cancer was the leading cause of cancer death,followed by gastric cancer,liver cancer, esophageal cancer,colorectum cancer and pancreas cancer. The mortality of top ten cancers
Larrañaga, Nerea; Sanchez, Mª José; Ardanaz, Eva; Felipe, Saray; Marcos-Gragera, Rafael; Ramos, María; Carulla, Marià; Chirlaque, Mª Dolores; Argüelles, Marcial V.; Martos, Carmen; Mateo, Antonio; Peris-Bonet, Rafael
Objective: To describe incidence patterns and trends in children (0-14 years) and adolescents (15-19 age-range) with solid tumours, except those of central nervous system (CNS), in Spain. Methods: Cases were drawn from eleven Spanish population-based cancer registries. Incidence was estimated for the period 1983-2007 and trends were evaluated using Joinpoint regression analysis. Results: The studied tumour groups accounted for 36% of total childhood cancers and 47.6% of those diagnosed in adolescence with annual rates per million of 53.5 and 89.3 respectively. In children 0 to 14 years of age, Neuroblastoma (NB) was the commonest (7.8%) followed by Soft-tissue sarcomas (STS) (6.3%), bone tumours (BT) (6.2%) and renal tumours (RT) (4.5%). NB was the most frequently diagnosed tumour before the 5th birthday, while STS and BT were the commonest at 5-9 years of age, and BT and Carcinoma and other epithelial tumours (COET) at 10-14. COET presented the highest incidence in adolescents, followed by germ-cell tumours (GCT), BT and STS. These four diagnostic groups accounted for 94% of total non-CNS solid tumours, in adolescents. Overall incidence rates increased significantly in children up to 1996 with an annual percentage change (APC) of 2.6% (95%CI: 1.7; 3.6). NB and COET showed significant time trend (APCs: 1.4% and 3.8% respectively) while other tumour groups such as RT, STS, BT or GCT had no significant changes over time. A significant increase was present in NB under the age of 5 and in BT and STS in children aged 10-14 years. In adolescents there were significant increases for all tumours combined (APC=2.7; 95%CI: 1.8-3.6) and for STS, GCT and COET (APCs: 3.2%, 4.4% and 3.5% respectively), while other tumour groups such as hepatic tumours, BT or thyroid carcinomas showed a decreasing trend or no increase. Conclusions: Overall, the incidence of the studied cancers in children increased along the period 1983-1996 with no posterior significant rise, while the incidence
Abstract Background In 1996, Mexico started to register cases of childhood cancer. Here, we describe the incidence of cancer in children, residing in ten Mexican jurisdictions, who were treated by the Instituto Mexicano del Seguro Social (IMSS). Methods New cases of childhood cancer, which were registered prospectively in nine principal Medical Centers of IMSS during the periods 1998–2000 (five jurisdictions) and 1996–2002 (five jurisdictions), were analyzed. Personnel were specifically train...
U.S. Environmental Protection Agency — Data Element Registry Services (DERS) is a resource for information about value lists (aka code sets / pick lists), data dictionaries, data elements, and EPA data...
Nilsen, Thomas S; Brandt, Ingunn; Magnus, Per; Harris, Jennifer R
Norway has a long-standing tradition in twin research, but the data collected in several population-based twin studies were not coordinated centrally or easily accessible to the scientific community. In 2009, the Norwegian Twin Registry was established at the Norwegian Institute of Public Health (NIPH) in Oslo with the purpose of creating a single research resource for Norwegian twin data. As of today, the Norwegian Twin Registry contains 47,989 twins covering birth years 1895-1960 and 1967-1979; 31,440 of these twins consented to participate in health-related research. In addition, DNA from approximately 4,800 of the twins is banked at the NIPH biobank and new studies are continually adding new data to the registry. The value of the Norwegian twin data is greatly enhanced by the linkage opportunities offered by Norway's many nationwide registries, spanning a broad array of medical, demographic, and socioeconomic information.
陈万青; 张思维; 郑荣寿; 雷正龙; 李光琳; 邹小农; 赵平
[目的]对全国肿瘤登记中心收集的2007年肿瘤的发病和死亡数据进行汇总,描述和分析中国肿瘤登记覆盖地区肿瘤负担情况.[方法]2010年,上报2007年肿瘤登记资料的登记处共48个,其中数据符合标准的登记处有38个.38个登记处覆盖人口59809313人(其中城市44609139人,农村15200174人),共报告新发病例165171例,死亡病例105916例.病理诊断比例为65.83%,只有死亡证明书比例为1.95%,死亡/发病比为0.64.分别计算38个登记地区发病率、死亡率,地区别、性别、年龄别发病死亡率,年龄调整率,疾病构成比和累积率,以反映登记地区恶性肿瘤的负担情况及其特征.[结果]38个中国肿瘤登记地区恶性肿瘤发病率为276.16/10万(其中男性305.22/10万,女性246.46/10万;城市地区为284.71/10万,农村地区为251.07/10万),中标率145.39/10万,世标率189.46/10万,0～74岁累积发病率为21.68%.恶性肿瘤死亡率为177.09/10万(其中男性219.15/10万,女性134.10/10万;城市地区为173.55/10万,农村地区为187.49/10万),中标率86.06/10万,世标率116.46/10万,0～74岁累积死亡率为13.06%.常见肿瘤发病前10位是肺癌、胃癌、结直肠癌、肝癌、女性乳腺癌、食管癌、胰腺癌、膀胱癌、脑瘤和淋巴瘤,占全部恶性肿瘤发病的76.12%.死亡前10位的肿瘤是肺癌、肝癌、胃癌、食管癌、结直肠癌、胰腺癌、乳腺癌、白血病、脑瘤和淋巴瘤,占全部恶性肿瘤死亡的84.37%.[结论]恶性肿瘤依然是威胁我国居民健康的重大疾病,其中肺癌、肝癌、胃癌、食管癌、结直肠癌和女性乳腺癌负担明显,应进一步加强对主要肿瘤的预防和控制.%[Purpose] To analyze cancer incidence and mortality data collected from Chinese cancer registries to evaluate cancer burden in 2007. [ Methods] In 2010, 48 cancer registries reported cancer incidence and mortality data of 2007. Among them 38 registries' data met the
贺宇彤; 梁迪; 李道娟; 翟京波; 刘波; 朱俊卿; 单保恩
Objective To analyze the cancer incidence and mortality in Hebei cancer registry available areas in 2011.Methods Data were collected from 8 population-based cancer registries systems in Hebei province.Incidence and mortality rates stratified by areas (urban/rural),sex,age group and cancer site were analyzed.10 common cancers in different groups,proportions and cumulative rates were calculated.The Chinese population census in the year 2000 and Segi's populations were used for age-standardized incidence/mortality rates.Results In all the 8 cancer registries that covering a total of 4 573 293 population (2 139 779 in urban and 2 433 514 in rural areas),data was used for the analysis.The total new cancer incidence cases and deaths were 11 269 and 7 477,respectively.All the morphologically verified cancer cases (MV％) accounted for 75.26％ while 3.85％ of the incident cases were identified only through death certification records (DCO％).The mortality to incidence ratio appeared as 0.66.The crude incidence appeared in the Hebei cancer registration areas was 246.41/105 (264.55/105 in males and 227.75/105 in females).The age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) appeared as 207.13/105 and 206.61/105 respectively,with the cumulative incidence rates as (0-74 age years old) 23.57％.The cancer incidence and ASIRC were 242.64/105 and 200.19/105 in urban areas,whereas 249.72/105 and 214.11/105,respectively in rural areas.The crude mortality in Hebei cancer registration areas was 163.49/105(196.54/105 in male,129.51/105 in female),with age-standardized mortality rates by Chinese standard population (ASMRC) and by world standard population (ASMRW) as 144.48/105 and 147.69/105.The cumulative mortality rate (0-74 age years old) was 14.71％.The cancer mortality (167.91/105) in rural areas seemed higher than the mortality (158.47/105) in urban areas.The most common sites of cancers were
Johnsen, Søren Paaske; Ingeman, Annette; Hundborg, Heidi Holmager
AIM OF DATABASE: The aim of the Danish Stroke Registry is to monitor and improve the quality of care among all patients with acute stroke and transient ischemic attack (TIA) treated at Danish hospitals. STUDY POPULATION: All patients with acute stroke (from 2003) or TIA (from 2013) treated...... at Danish hospitals. Reporting is mandatory by law for all hospital departments treating these patients. The registry included >130,000 events by the end of 2014, including 10,822 strokes and 4,227 TIAs registered in 2014. MAIN VARIABLES: The registry holds prospectively collected data on key processes...... of care, mainly covering the early phase after stroke, including data on time of delivery of the processes and the eligibility of the individual patients for each process. The data are used for assessing 18 process indicators reflecting recommendations in the national clinical guidelines for patients...
Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels
and Pincer resection in 93.5% of the cases. Labral refixation or repair was done in 70.3% of the cases. The most common type of acetabular chondral damage was grade II lesions (36.6%). Grade III and IV changes were seen in 36.1% of the cases. The preoperative iHOT12 was 45 (mean) based on all 12 items. EQ-5D....... The problems with development and maintaining a large clinical registry are described and further studies are needed to validate data completeness. We consider the development of a national clinical registry for hip arthroscopy as a successful way of developing and maintaining a valuable clinical...
Özcan, Cengiz; Juel, Knud; Flensted Lassen, Jens;
AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...... undergoing coronary angiography (CAG), percutaneous coronary intervention (PCI), coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. MAIN VARIABLES: The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR...
Sarzi-Puttini, Piercarlo; Varisco, Valentina; Ditto, Maria Chiara; Benucci, Maurizio; Atzeni, Fabiola
The introduction of new biological drugs for the treatment of rheumatoid arthritis and spondyloarthritis has led to the creation of a number of registries in Europe and the United States. Most of them are sponsored by national rheumatology societies, and provide information that is useful in clinical practice concerning the clinical characteristics, efficacy, and safety of all licensed biological drugs. Their findings also help to improve our understanding of the quality of life and working ability of patients receiving biological drugs, and suggest methods for allocating resources. However, there are only a few registries for psoriatic arthritis, and efforts should be made to increase their number to obtain further reliable and useful data.
Duan, Haiping; Ning, Feng; Zhang, Dongfeng;
In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants...... of metabolic disorders and health behaviors during puberty and young adulthood. Adult twins have been sampled for studying heritability of multiple phenotypes associated with metabolic disorders. In addition, an elderly twin cohort has been recruited with a focus on genetic studies of aging-related phenotypes...
Li, Hongyan; Feng, Bingjian; Miron, Alexander; Chen, Xiaoqing; Beesley, Jonathan; Bimeh, Emmanuella; Barrowdale, Daniel; John, Esther M.; Daly, Mary B.; Andrulis, Irene L.; Buys, Saundra S.; Kraft, Peter; Thorne, Heather; Chenevix-Trench, Georgia; Southey, Melissa; Antoniou, Antonis C.; James, Paul A.; Terry, Mary Beth; Phillips, Kelly-Anne; Hopper, John L.; Mitchell, Gillian; Goldgar, David E.
Purpose This study examined the utility of sets of Single Nucleotide Polymorphisms (SNPs) in familial but non-BRCA-associated breast cancer (BC). Methods We derived a polygenic risk score (PRS) based on 24 known BC risk SNPs for 4,365 women from the BCFR and kConFab familial BC cohorts. We compared scores in women based on cancer status at baseline. 2,599 women unaffected at enrollment were followed for an average of 7.4 years. Cox proportional hazards regression was used to analyze the association of PRS with BC risk. The BOADICEA risk prediction algorithm was used to measure risk based on family history alone. Results The mean (SD) PRS baseline was 2.25 (0.35) for the affected and 2.17 (0.35) for unaffected women from combined cohorts (p<10−6). During follow-up, 205 BCs occurred. The hazard ratios for continuous PRS (per SD), and upper vs. lower quintiles were 1.38 (95% CI: 1.22–1.56) and 3.18 (95% CI: 1.84–5.23) respectively. Based on their PRS-based predicted risk, management for up to 23% of women could be altered. Conclusion Including BC-associated SNPs in risk assessment can provide more accurate risk prediction than family history alone and can influence recommendations for cancer screening and prevention modalities for high-risk women. PMID:27171545
Patterns of risk of cancer in patients with metal-on-metal hip replacements versus other bearing surface types: a record linkage study between a prospective joint registry and general practice electronic health records in England.
Full Text Available BACKGROUND: There are concerns that metal-on-metal hip implants may cause cancer. The objective of this study was to evaluate patterns and timing of risk of cancer in patients with metal-on-metal total hip replacements (THR. METHODS: In a linkage study between the English National Joint Registry (NJR and the Clinical Practice Research Datalink (CPRD, we selected all THR surgeries (NJR between 2003 and 2010 (n = 11,540. THR patients were stratified by type of bearing surface. Patients were followed up for cancer and Poisson regression was used to derive adjusted relative rates (RR. RESULTS: The risk of cancer was similar in patients with hip resurfacing (RR 0.69; 95% Confidence Interval [CI] 0.39-1.22 or other types of bearing surfaces (RR 0.96; 95% CI 0.64-1.43 compared to individuals with stemmed metal-on-metal THR. The pattern of cancer risk over time did not support a detrimental effect of metal hip implants. There was substantial confounding: patients with metal-on-metal THRs used fewer drugs and had less comorbidity. CONCLUSIONS: Metal-on-metal THRs were not associated with an increased risk of cancer. There were substantial baseline differences between the different hip implants, indicating possibility of confounding in the comparisons between different types of THR implants.
Özcan, Cengiz; Juel, Knud; Lassen, Jens Flensted
AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...
Validity of the recorded International Classification of Diseases, 10th edition diagnoses codes of bone metastases and skeletal-related events in breast and prostate cancer patients in the Danish National Registry of Patients
Annette Østergaard Jensen
Full Text Available Annette Østergaard Jensen1, Mette Nørgaard1, Mellissa Yong2, Jon P Fryzek2, Henrik Toft Sørensen11Department of Clinical Epidemiology, Aarhus University hospital, Århus, Denmark; 2Global Epidemiology, Amgen inc., Thousands Oaks, CA, USAObjective: The clinical history of bone metastases and skeletal-related events (SREs secondary to cancers is not well understood. In support of studies of the natural history of bone metastases and SREs in Danish prostate and breast cancer patients, we estimated the sensitivity and specificity of hospital diagnoses for bone metastases and SREs (ie, radiation therapy to the bone, pathological or osteoporotic fractures, spinal cord compression and surgery to the bone in a nationwide medical registry in Denmark.Study design and setting: In North Jutland County, Denmark, we randomly sampled 100 patients with primary prostate cancer and 100 patients with primary breast cancer diagnoses from the National Registry of Patients (NRP, during the period January 1st, 2000 to December 31st, 2000 and followed them for up to five years after their cancer diagnosis. We used information from medical chart reviews as the reference for estimating sensitivity, and specificity of the NRP International Classification of Diseases, 10th edition (ICD-10 coding for bone metastases and SRE diagnoses. Results: For prostate cancer, the overall sensitivity of bone metastases or SRE coding in the NRP was 0.54 (95% confidence interval [CI]: 0.39–0.69, and the specificity was 0.96 (95% CI: 0.87–1.00. For breast cancer, the overall sensitivity of bone metastases or SRE coding in the NRP was 0.58 (95% CI: 0.34–0.80, and the specificity was 0.95 (95% CI: 0.88–0.99. Conclusion: We measured the validity of ICD-10 coding in the Danish NRP for bone metastases and SREs in prostate and breast cancer patients and found it has adequate sensitivity and high specificity. The NRP remains a valuable tool for clinical epidemiological studies of bone
Skytthe, Axel; Ohm Kyvik, Kirsten; Vilstrup Holm, Niels;
Introduction: The Danish Twin Registry is a unique source for studies of genetic, familial and environmental factors on life events, health conditions and diseases. Content: More than 85,000 twin pairs born 1870-2008 in Denmark. Validity and coverage: Four main ascertainment methods have been...... employed. Completeness of ascertainment varies according to birth cohorts. For birth cohorts 1870-1930 both twins should survive to age 6 years. From 1931-1968 72% of all twin pairs has been ascertained, with complete ascertainment of all live born twins since 1968. CONCLUSION: Because twins have been...... identified independent of traits and on a population basis, the Danish Twin Registry is well suited for studies to understand the influence of genetic and environmental factors for a wide variety of diseases and traits....
Jahanfar, Shayesteh; Jaffar, Sharifah Halimah
The National Malaysian Twin Registry was established in Royal College of Medicine, Perak, University Kuala Lumpur (UniKL) in June 2008 through a grant provided by UniKL. The general objective is to facilitate scientific research involving participation of twins and their family members in order to answer questions of health and wellbeing relevant to Malaysians. Recruitment is done via mass media, poster, and pamphlets. We now have 266 adult and 204 children twins registered. Several research projects including reproductive health study of twins and the role of co-bedding on growth and development of children are carried out. Registry holds annual activities for twins and seeks to provide health-related information for twins. We seek international collaboration.
Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea
evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. DESCRIPTIVE DATA......: The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access...
The JISC Information Environment Service Registry (IESR) contains descriptions of collections of resources available to researchers, learners and teachers in the UK, along with technical service access details. This paper describes the data model and metadata description schema of IESR, and the services IESR provides to disseminate its records. There is a particular focus on the Open Archives Initiative Protocol for Metadata Harvesting (OAI-PMH) interface, including a possible use scenario. I...
Ferreira, Paulo H; Oliveira, Vinicius C; Junqueira, Daniela R; Cisneros, Lígia C; Ferreira, Lucas C; Murphy, Kate; Ordoñana, Juan R; Hopper, John L; Teixeira-Salmela, Luci F
The Brazilian Twin Registry (BTR) was established in 2013 and has impelled twin research in South America. The main aim of the initiative was to create a resource that would be accessible to the Brazilian scientific community as well as international researchers interested in the investigation of the contribution of genetic and environmental factors in the development of common diseases, phenotypes, and human behavior traits. The BTR is a joint effort between academic and governmental institutions from Brazil and Australia. The collaboration includes the Federal University of Minas Gerais (UFMG) in Brazil, the University of Sydney and University of Melbourne in Australia, the Australian Twin Registry, as well as the research foundations CNPq and CAPES in Brazil. The BTR is a member of the International Network of Twin Registries. Recruitment strategies used to register twins have been through participation in a longitudinal study investigating genetic and environmental factors for low back pain occurrence, and from a variety of sources including media campaigns and social networking. Currently, 291 twins are registered in the BTR, with data on demographics, zygosity, anthropometrics, and health history having been collected from 151 twins using a standardized self-reported questionnaire. Future BTR plans include the registration of thousands of Brazilian twins identified from different sources and collaborate nationally and internationally with other research groups interested on twin studies.
Gimsing, Peter; Holmström, Morten O; Klausen, Tobias Wirenfelt
is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research. STUDY POPULATION: All newly......, clinical complications, prognostics, first- and second-line treatments, treatment responses, progression free, and overall survival. DESCRIPTIVE DATA: Up to June 2015, 2,907 newly diagnosed patients with MM, 485 patients with smoldering MM, 64 patients with plasma cell leukemia, and 191 patients......AIM: The Danish National Multiple Myeloma Registry (DMMR) is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim...
Approaches 18 19 Primary ADL Registry Contributors Contributor Records Entry Date Navy eLearning (US Navy) 2,086 08/05/2008 Joint Knowledge Development...ADL Registry http://adlregistry.adlnet.gov/ Navy eLearning Content Team https://www.netc.navy.mil/ile Joint Knowledge Online http
Dreyer, Lene; Mellemkjær, Lene; Andersen, Anne Rødgaard;
To investigate the incidence of cancer in arthritis patients treated with or without TNFα inhibitors (TNF-I).......To investigate the incidence of cancer in arthritis patients treated with or without TNFα inhibitors (TNF-I)....
S.A.M. van de Schans (Saskia)
textabstractCancers arising from the haematopoietic and lymphoid tissue comprise a heterogeneous group of malignancies with diverse clinical and biological features. The World Health Organization (WHO) classification of Haematopoietic and Lymphoid tissue, classified these cancers based on histologic
Husson, O.; Mols, F.; Poll-Franse, L. van de; Vries, J de; Schep, G.; Thong, M.S.
PURPOSE: Cancer survivors commonly experience fatigue, related to disease and its treatment. This study aimed to compare fatigue severity among survivors of different cancer types with a normative population and also to identify variations in fatigue among cancer survivors according to clinical and
Skytthe, Axel; Christiansen, Lene; Kyvik, Kirsten Ohm;
decade of combining questionnaire and survey data with national demographic, social, and health registers in Statistics Denmark. Second, we describe our most recent data collection effort, which was conducted during the period 2008-2011 and included both in-person assessments of 14,000+ twins born 1931......Over the last 60 years, the resources and the research in the Danish Twin Registry (DTR) have periodically been summarized. Here, we give a short overview of the DTR and a more comprehensive description of new developments in the twenty-first century. First, we outline our experience over the last......-1969 and sampling of biological material, hereby expanding and consolidating the DTR biobank. Third, two examples of intensively studied twin cohorts are given. The new developments in the DTR in the last decade have facilitated the ongoing research and laid the groundwork for new research directions....
Arboe, Bente; Josefsson, Pär; Jørgensen, Judit;
AIM OF DATABASE: The Danish National Lymphoma Registry (LYFO) was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark. STUDY POPULATION: The LYFO database was established in 1982 as a seminational database including...... all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000. MAIN VARIABLES: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each...... patient: a primary registration form, a treatment form, a relapse form, and a follow-up form. Variables are used to calculate six result quality indicators (mortality 30 and 180 days after diagnosis, response to first-line treatment, and survival estimates 1, 3, and 5 years after the time of diagnosis...
The Measuring Your Health study: Leveraging community-based cancer registry recruitment to establish a large, diverse cohort of cancer survivors for analyses of measurement equivalence and validity of the Patient Reported Outcomes Measurement Information System® (PROMIS® short form items
Roxanne E. Jensen
Full Text Available The Measuring Your Health (MY-Health study was designed to fill evidence gaps by validating eight Patient Reported Outcomes Measurement Information System® (PROMIS® domains (Anxiety, Depression, Fatigue, Pain Interference, Physical Function, Sleep Disturbance, Applied Cognitive Function, and Ability to Participate in Social Roles and Activities across multiple race-ethnic and age groups in a diverse cohort of cancer patients. This paper provides detailed information on MY-Health study design, implementation, and participant cohort; it identifies key challenges and benefits of recruiting a diverse community-based cancer cohort. Between 2010 and 2012, we identified eligible patients for the MY-Health study in partnership with four Surveillance, Epidemiology, and End Results (SEER program cancer registries located in California, Louisiana, and New Jersey. The overall response rate for the MY-Health cohort (n = 5,506 was 34 %, with a median response time of 9.5 months after initial cancer diagnosis. The cohort represented meaningful diversity of age (22 % under 49 years of age and race/ethnicity (41 % non-Hispanic White across seven cancers. Challenges included lower response rates by race/ethnic minorities, young, and advanced-stage cancer patients, use of non-final registry information for eligibility identification, and lower use of translated surveys than expected. The MY-Health cohort represents one of the largest efforts to measure the full range of patient-reported symptoms experienced after initial cancer treatment. It provides sufficient diversity in terms of sociodemographics, symptoms, and function to provide a meaningful validation of eight PROMIS measures.
Tamminga, S. J.; Bultmann, U.; Husson, O.; Kuijpens, J. L. P.; Frings-Dresen, M. H. W.; de Boer, Angela G. E. M.
To obtain insight into employment and insurance outcomes of thyroid cancer survivors and to examine the association between not having employment and other factors including quality of life. In this cross-sectional population-based study, long-term thyroid cancer survivors from the Netherlands parti
Diabetes; Cardiovascular Disease; Epilepsy; Migraine; Neurological Disorders; Cancer; Bariatric Surgery Candidate; Organ or Tissue Transplant; Complications; Lupus Erythematosus, Systemic; Other Hematologic Conditions; Other Venous Embolism and Thrombosis
Jamalia, R; Sunder, R; Alagaratnam, J; Goh, P P
Retinoblastoma is a childhood ocular cancer. The aim of this paper is to describe the clinical and epidemiological characteristics of patients with retinoblastoma in a major paediatric ophthalmology center in the country. Retrospective information was collected through the retinoblastoma registry. Late presentation with advanced staging is a major problem.
Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé
at hand.Here we present a community-driven curation effort, supported by ELIXIR-the European infrastructure for biological information-that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry...... is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners.As of September 2015, the registry includes 1633 resources, with depositions from 91 individual registrations including 40 institutional providers and 51 individuals. With community support...
Aslani, Hamidreza; Nourbakhsh, Seyed Taghi; Lahiji, Farivar A; Heydarian, Keykavoos; Jabalameli, Mahmood; Ghazavi, Mohammad Taghi; Tahmasebi, Mohammad Naghi; Fayyaz, Mahmoud Reza; Sazegari, Mohammad Ali; Mohaddes, Maziar; Rajabpour, Mojtaba; Emami, Mohammad; Jazayeri, Seyyed Mohammad; Madadi, Firooz; Farahini, Hossein; Mirzatoloee, Fardin; Gharahdaghi, Mohammad; Ebrahimzadeh, Mohammad Hossein; Ebrahimian, Mohammadreza; Mirvakili, Hossein; Bashti, Kaveh; Almasizadeh, Mohtasham; Abolghasemian, Mansour; Taheriazam, Afshin; Motififard, Mehdi; Yazdi, Hamidreza; Mobarakeh, Mahmood Karimi; Shayestehazar, Masoud; Moghtadae, Mehdi; Siavashi, Babak; Sajjadi, Mohammadreza M; Rasi, Alireza Manafi; Chabok, Seyyed Kazem; Zafarani, Zohreh; Salehi, Shahin; Ahmadi, Monireh; Mohammadi, Amin; Shahsavand, Mohammad Ebrahim
Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR) with a joint collaboration of the Social Security Organization (SSO) and academic research departments considering the requirements of the Iran's Ministry of Health and Education.
Full Text Available BACKGROUND: Sex differences have been reported in the prognosis of certain cancers. In this study, we investigated whether Korean females display better survival rates compared with male patients for solid tumor sites. METHODS: We analyzed data from the Korean National Cancer Incidence Database from 599,288 adult patients diagnosed with solid cancers between 2005 and 2009. Patients were followed until December 2010. We applied a relative excess risk (RER model adjusting for year of follow-up, age at diagnosis, and stage at diagnosis. RESULTS: For all solid cancer sites combined, women displayed an 11% lower risk of death compared to men (RER 0.89; 95% CI 0.88-0.90 after adjusting for year of follow-up, age, stage, and case mix. Women showed significantly lower RERs for the following sites: head/neck, esophagus, small intestine, liver, nasal cavities, lung, bone/cartilages, melanoma of skin, soft tissue, brain and CNS, and thyroid. In contrast, women displayed a poorer prognosis than did men for colorectal, laryngeal, kidney and bladder cancer. However, the survival gaps between men and women narrowed by increase in age; female patients over 75 years of age displayed a 3% higher RER of death compared with males in this age group. CONCLUSIONS: Female cancer patients display an improved survival for the majority of solid tumor sites, even after adjustment for age and stage. Age at diagnosis was the major contributor to the women's survival advantage.
Liu, Lifang; Giusti, Francesco; Schaapveld, Michael; Aleman, Berthe; Lugtenburg, Pieternella; Meijnders, Paul; Hutchings, Martin; Lemmens, Valery; Bogaerts, Jan; Visser, Otto
The survival of patients diagnosed with Hodgkin lymphoma (HL) has improved from 70% to 90% in clinical trials. However, population-based data has shown lower survival. In this study, clinical trial data were linked with cancer registry to identify trial and non-trial participants and differences in overall survival and associated factors were assessed. In 1986-2004, 27% of HL patients aged 15-70 years participated in clinical trials. Compared to non-trial participants, trial participants were younger (median age, 31 vs. 34 years), had staging registered more accurately and had an 8% higher 20-year survival rate (73% vs. 65%). After adjusting for baseline differences, no differences in survival (hazard ratio = 0·96, 95% confidence interval 0·82-1·12), or in subgroup analysis according to stage, remained. Over time, increased administration of chemotherapy in combination with radiotherapy, together with the decreased use of radiotherapy alone was observed among the trial population. This trend was later followed in non-trial participants, coinciding with a similar 'take-up' in survival. The observed superior survival among patients with HL treated in clinical trials can be largely explained by the differences in baseline characteristics, particularly younger age. High trial participation rate and centralized expertise facilitates the implementation of trial findings to real-world practice.
Beekers, N.; Husson, O.; Mols, F.; Eenbergen, M. van; Poll-Franse, L.V. van de
BACKGROUND: Dissatisfaction with information provided by healthcare providers may be a reason for cancer survivors to seek health information on the Internet and may also result in more symptoms of anxiety and depression among this population. OBJECTIVE: The aim of this study was to investigate whet
Husson, O.; Mols, F.; Ezendam, N.P.; Schep, G.; Poll-Franse, L.V. van de
PURPOSE: The present study aims to examine the longitudinal relation between physical activity (PA) and health-related quality of life (HRQoL) among colorectal cancer (CRC) survivors. METHODS: Individuals diagnosed with CRC between 2000 and 2009 as registered by the Dutch population-based Eindhoven
Husson, O.; Mols, F.; Fransen, M.P.; Poll-Franse, L.V. van de; Ezendam, N.P.
BACKGROUND: The objectives of the study were to examine the prevalence of health literacy (HL) among colorectal cancer (CRC) survivors and the relation between HL and health behaviors and to explore whether or not HL and health behaviors are independently associated with health-related quality of li
Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...
Full Text Available Bente Arboe,1 Pär Josefsson,2 Judit Jørgensen,3 Jacob Haaber,4 Paw Jensen,5 Christian Poulsen,6 Dorthe Rønnov-Jessen,7 Robert S Pedersen,8 Per Pedersen,9 Mikael Frederiksen,10 Michael Pedersen,1 Peter de Nully Brown1 1Department of Hematology, Copenhagen University Hospital, Rigshospitalet, 2Department of Hematology, Copenhagen University Hospital, Herlev Hospital, Copenhagen, 3Department of Hematology, Aarhus University Hospital, Aarhus, 4Department of Hematology, Odense University Hospital, Odense, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Roskilde Hospital, Roskilde, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Holstebro Hospital, Holstebro, 9Department of Hematology, Esbjerg Hospital, Esbjerg, 10Department of Hematology, Haderslev Hospital, Haderslev, Denmark Aim of database: The Danish National Lymphoma Registry (LYFO was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark. Study population: The LYFO database was established in 1982 as a seminational database including all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000. Main variables: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each patient: a primary registration form, a treatment form, a relapse form, and a follow-up form. Variables are used to calculate six result quality indicators (mortality 30 and 180 days after diagnosis, response to first-line treatment, and survival estimates 1, 3, and 5 years after the time of diagnosis, and three process quality indicators (time from diagnosis until the start of treatment, the presence of relevant diagnostic markers, and inclusion rate in clinical protocols. Descriptive data: Approximately 23
Lim, Raymond Boon Tar; Loy, En Yun; Lim, Gek Hsiang; Zheng, Huili; Chow, Khuan Yew; Lim, Soon Thye
Descriptive epidemiology on incidence and survival by lymphoid neoplasm (LN) subtypes using the 2008 World Health Organisation (WHO) classification remained limited in Asia. The aim of this study was to evaluate whether gender and ethnic differences in incidence and survival of LN subtypes existed using the Singapore Cancer Registry (SCR) from 1998 to 2012. We derived age standardised incidence rates (ASIRs) by the direct standardisation method and 5-year relative survival (RSR) by the Ederer II method and period approach. Five-year observed survival (OS) was obtained for each ethnicity. Malays had the highest ASIR of total LNs among the three ethnicities for each time period. The largest increase in 5-year RSR subtypes was follicular lymphoma from 43.8% in 1998-2002 to 82.3% in 2008-2012; followed by chronic lymphocytic leukaemia (CLL)/small lymphocytic lymphoma (SLL) from 48.1% in 1998-2002 to 77.9% in 2008-2012. Although males had higher incidence than females in each time period, females had greater 5-year RSR for follicular lymphoma (89.8% in 2008-2012 for females vs. 76.6% in 2008-2012 for males) and CLL/SLL (78.7% in 2008-2012 for females vs. 76.7% in 2008-2012 for males). All three ethnicities experienced an overall increase in 5-year OS for mature B-cell lymphoma, with Indians experiencing the greatest increase (37.1% in 1998-2002 to 61.1% in 2008-2012), followed by Malays (30.8% in 1998-2002 to 48.7% in 2008-2012) and then Chinese (36.4% in 1998-2002 to 51.3% in 2008-2012). Our study demonstrated that improved mature B-cell lymphoma survival was not only observed in the West, but also in Singapore.
Brønnum-Hansen, Henrik; Koch-Henriksen, Nils; Stenager, Egon
Introduction: The Danish Multiple Sclerosis (MS) Registry was established in 1956. Content: The register comprises data on all Danes who had MS in 1949 or who have been diagnosed since. Data on new cases and updated information on persons with an MS diagnosis already notified are continuously...
Davids, M Razeen; Eastwood, John B; Selwood, Neville H; Arogundade, Fatiu A; Ashuntantang, Gloria; Benghanem Gharbi, Mohammed; Jarraya, Faiçal; MacPhee, Iain A M; McCulloch, Mignon; Plange-Rhule, Jacob; Swanepoel, Charles R; Adu, Dwomoa
There is a dearth of data on end-stage renal disease (ESRD) in Africa. Several national renal registries have been established but have not been sustainable because of resource limitations. The African Association of Nephrology (AFRAN) and the African Paediatric Nephrology Association (AFPNA) recognize the importance of good registry data and plan to establish an African Renal Registry. This article reviews the elements needed for a successful renal registry and gives an overview of renal registries in developed and developing countries, with the emphasis on Africa. It then discusses the proposed African Renal Registry and the first steps towards its implementation. A registry requires a clear purpose, and agreement on inclusion and exclusion criteria, the dataset and the data dictionary. Ethical issues, data ownership and access, the dissemination of findings and funding must all be considered. Well-documented processes should guide data collection and ensure data quality. The ERA-EDTA Registry is the world's oldest renal registry. In Africa, registry data have been published mainly by North African countries, starting with Egypt and Tunisia in 1975. However, in recent years no African country has regularly reported national registry data. A shared renal registry would provide participating countries with a reliable technology platform and a common data dictionary to facilitate joint analyses and comparisons. In March 2015, AFRAN organized a registry workshop for African nephrologists and then took the decision to establish, for the first time, an African Renal Registry. In conclusion, African nephrologists have decided to establish a continental renal registry. This initiative could make a substantial impact on the practice of nephrology and the provision of services for adults and children with ESRD in many African countries.
The Open Researcher and Contributor ID (ORCID) registry helps resolve name ambiguity by assigning persistent unique identifiers that automatically link to a researcher's publications, grants, and other activities. This article provides an overview of ORCID and its benefits, citing several examples of its use in cancer and nursing journals. The article also briefly describes My NCBI and the Science Experts Network Curriculum Vitae (SciENcv) and its connection to ORCID.
Full Text Available Windows Registry forensics is an important branch of computer and network forensics. Windows Registry is often considered as the heart of Windows Operating Systems because it contains allof the configuration setting of specific users, groups, hardware, software, and networks. Therefore, Windows Registry can be viewed as a gold mine of forensic evidences which could be used in courts. This paper introduces the basics of Windows Registry, describes its structure and its keys and subkeys thathave forensic values. This paper also discusses how the Windows Registry forensic keys can be applied in intrusion detection.
Registries play a key role in service-oriented applications. Originally, they were neutral players between service providers and clients. The UDDI Business Registry (UBR) was meant to foster these concepts and provide a common reference for companies interested in Web services. The more Web services were used, the more companies started create their own local registries: more efficient discovery processes, better control over the quality of published information, and also more sophisticated publication policies motivated the creation of private repositories. The number and heterogeneity of the different registries - besides the decision to close the UBR are pushing for new and sophisticated means to make different registries cooperate. This paper proposes DIRE (DIstributed REgistry), a novel approach based on a publish and subscribe (P/S) infrastructure to federate different heterogeneous registries and make them exchange information about published services. The paper discusses the main motivations for the P...
Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.
The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.
Demleitner, Markus; Taylor, Mark; Normand, Jonathan
The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.
Rasmussen, Jeppe; Jakobsen, John; Brorson, Stig
The Danish Shoulder Arthroplasty Registry (DSR) was established in 2004. Data are reported electronically by the surgeons. Patient-reported outcome is collected 10-14 months postoperatively using the Western Ontario osteoarthritis of the shoulder index (WOOS). 2,137 primary shoulder arthroplasties......% reverse shoulder arthroplasties, and 3% total arthroplasties. Median WOOS was 59% (IQR: 37-82). 5% had been revised by the end of June 2010. The most frequent indications for revision were dislocation or glenoid attrition....
Kildemoes, Helle Wallach; Toft Sørensen, Henrik; Hallas, Jesper
Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR...... on the dispensed drug. Conclusion: The possibility of linkage with many other nationwide individual-level data sources renders the DNPR a very powerful pharmacoepidemiological tool...
Full Text Available Peter Gimsing,1 Morten O Holmström,2 Tobias Wirenfelt Klausen,3 Niels Frost Andersen,4 Henrik Gregersen,5 Robert Schou Pedersen,6 Torben Plesner,7 Per Trøllund Pedersen,8 Mikael Frederiksen,9 Ulf Frølund,2 Carsten Helleberg,3 Annette Vangsted,1 Peter de Nully Brown,1 Niels Abildgaard,10 On behalf of the Danish Myeloma Study Group 1Department of Hematology, Rigshospitalet, Copenhagen, 2Department of Hematology, Roskilde Sygehus, Roskilde, 3Department of Hematology, Herlev Hospital, Copenhagen, 4Department of Hematology, Aarhus University Hospital, Aarhus, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Holstebro Hospital, Holstebro, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Hospital of Southwestern Jutland, Esbjerg, 9Department of Internal Medicine, Hospital of Southern Jutland, Aabenraa, 10Department of Hematology, Odense University Hospital, Odense, Denmark Aim: The Danish National Multiple Myeloma Registry (DMMR is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research.Study population: All newly diagnosed patients with multiple myeloma (MM, smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome, monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with
Full Text Available Inge Schjødt,1 Anne Nakano,2,3 Kenneth Egstrup,4 Charlotte Cerqueira5 1Department of Cardiology, 2Department of Clinical Epidemiology, Aarhus University Hospital, 3Registry Support Centre of Clinical Quality and Health Informatics (West, Aarhus, 4Department of Cardiology, Odense University Hospital, Svendborg Hospital, Svendborg, 5Registry Support Centre of Epidemiology and Biostatistics (East, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, Denmark Aim of database: The aim of the Danish Heart Failure Registry (DHFR is to monitor and improve the care of patients with incident heart failure (HF in Denmark. Study population: The DHFR includes inpatients and outpatients ($18 years with incident HF. Reporting to the DHFR is mandatory for the Danish hospital departments treating patients with incident HF. Final decision to register a patient in the DHFR is made by a cardiologist to ensure the validity of the diagnosis. Approximately 42,400 patients with incident HF were registered in the DHFR in July 2015. Main variables and descriptive data: The main variables recorded in the DHFR are related to the indicators for quality of care in patients with incident HF: performance of echocardiography, functional capacity (New York Heart Association functional classification, pharmacological therapy (angiotensin converting enzyme/angiotensin II antagonist inhibitors, beta-blockers, and mineralocorticoid receptor antagonist, nonpharmacological therapy (physical training, patient education, 4-week readmission rate, and 1-year mortality. Furthermore, basic patient characteristics and prognostic factors (eg, smoking and alcohol are recorded. At the annual national audit in the DHFR, the indicators and standards for good clinical quality of care for patients with HF are discussed, and recommendations are reported back to clinicians to promote quality improvement initiatives. Furthermore, results and recommendations are communicated
Veltkamp, R; Jüttler, E; Pfefferkorn, T; Purrucker, J; Ringleb, P
Study registries offer the opportunity to evaluate the effects of new therapies or to observe the consequences of new treatments in clinical practice. The SITS-MOST registry confirmed the validity of findings from randomized trials on intravenous thrombolysis concerning safety and efficacy in the clinical routine. Current study registries concerning new interventional thrombectomy techniques suggest a high recanalization rate; however, the clinical benefit can only be evaluated in randomized, controlled trials. Similarly, the experiences of the BASICS registry on basilar artery occlusion have led to the initiation of a controlled trial. The benefit of hemicraniectomy in malignant middle cerebral artery infarction has been demonstrated by the pooled analysis of three randomized trials. Numerous relevant aspects are currently documented in the DESTINY-R registry. Finally, the recently started RASUNOA registry examines diagnostic and therapeutic aspects of ischemic and hemorrhagic stroke occurring during therapy with new oral anticoagulants.
De Leede, E. M.; Sibinga Mulder, B. G.; Bastiaannet, E.
, Spain, Sweden, Ukraine and United Kingdom. The number of collected data items varied between 16 and 285. This led to a shared items list of 25 variables divided into five categories: patient characteristics, preoperative diagnostics, treatment, staging and survival. Eight countries shared their first...
Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth
AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory...... in an annual report. All standards for the quality indicators have been met at a national level since 2014. Indicators for treatment status 1 year after diagnosis are under consideration (now prevalent HF). CONCLUSION: The DHFR is a valuable tool for continuous improvement of quality of care in patients...
Tessier Cloutier, B; Clarke, A E; Ramsey-Goldman, R
Evidence points to a decreased breast cancer risk in systemic lupus erythematosus (SLE). We analyzed data from a large multisite SLE cohort, linked to cancer registries.......Evidence points to a decreased breast cancer risk in systemic lupus erythematosus (SLE). We analyzed data from a large multisite SLE cohort, linked to cancer registries....
Christensen, Karina Garnier; Fenger-Grøn, Morten; Flarup, Kaare Rud;
,272,100 controls. Monthly consultation frequencies, monthly proportions of persons receiving health services and three-month incidence rate ratios for one year before and one year after the cancer diagnosis were calculated. Data were analysed separately for women and men. RESULTS: Three months before...... one month after diagnosis and the number of hospital contacts three months after diagnosis. The proportion of cancer patients receiving each of these three types of health services remained more than 10% above that of the reference population from two months before diagnosis until the end of the study...
Cowan Anne E
Full Text Available Abstract Background Population-based registries have been promoted as an effective method to improve childhood immunization rates, yet rates of registry participation in the private sector are low. We sought to describe, through a national overview, the perspectives of childhood immunization providers in private practice regarding factors associated with participation or non-participation in immunization registries. Methods Two mailed surveys, one for 264 private practices identified as registry non-participants and the other for 971 identified as registry participants, from 15 of the 31 states with population-based statewide immunization registries. Frequency distributions were calculated separately for non-participants and participants regarding the physician-reported factors that influenced decisions related to registry participation. Pearson chi-square tests of independence were used to assess associations among categorical variables. Results Overall response rate was 62% (N = 756. Among non-participants, easy access to records of vaccines provided at other sites (N = 101, 68% and printable immunization records (N = 82, 55% were most often cited as "very important" potential benefits of a registry, while the most commonly cited barriers to participation were too much cost/staff time (N = 36, 38% and that the practice has its own system for recording and monitoring immunizations (N = 35, 37%. Among registry participants, most reported using the registry to input data on vaccines administered (N = 326, 87% and to review immunization records of individual patients (N = 302, 81%. A minority reported using it to assess their practice's immunization coverage (N = 110, 29% or generate reminder/recall notices (N = 54, 14%. Few participants reported experiencing "significant" problems with the registry; the most often cited was cost/staff time to use the registry (N = 71, 20%. Conclusion Most registry participants report active participation with few
Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.
黄哲宙; 陈万青; 吴春晓; 郑荣寿; 陈建国; 杨念念; 王宁; 张思维; 郑莹
目的:描述2003-2007年中国女性乳腺癌的发病和死亡情况.方法:从经审核合格的全国32个肿瘤登记点收集2003-2007年女性乳腺癌发病、死亡和相应的人口数据,对数据进行汇总和描述分析.结果:2003-2007年全国32个肿瘤登记点女性乳腺癌合计发病率为41.64/10万,居女性癌症发病的第1位；合计死亡率为9.63/10万,居女性癌症死因的第6位.女性乳腺癌在全国城市地区的发病率和死亡率均高于农村地区,城市地区发病率是农村地区的3.04倍,城市地区死亡率是农村地区的1.92倍.肿瘤登记点合计女性乳腺癌发病率在GLOBOCAN 2008统计的184个国家中排位第110位,死亡率排位第172位.结论:女性乳腺癌已经成为中国女性最常见的癌症之一,中国城市女性乳腺癌的发病率和死亡率水平显著高于农村,但中国女性乳腺癌的发病率和死亡率在世界范围仍处于中低水平.%Objective: To describe the incidence and mortality of female breast cancer in China during 2003-2007. Methods: The incidence and mortality data of female breast cancer and the corresponding population data from 32 eligible cancer registries in China during 2003-2007 were collected and analyzed. Results: The combined crude incidence rate of female breast cancer during 2003-2007 was 41.64 per 100 000, which was the highest among female cancer incidence rates. The combined crude mortality rate of female breast cancer was 9.63 per 100 000, which was ranked as the sixth among the mortality rates of all female cancers. The incidence rate was 3.04 times higher and the mortality rate was 1.92 times higher in urban areas than those in rural areas. Compared to the incidence and mortality rates of 184 regions provided from GLABOCAN 2008 database, the female breast cancer incidence in China was ranked as the one hundred and tenth, and the mortality was ranked as the one hundred and seventy-second. Conclusion: Breast cancer has been becoming
Entering medical records into registries of all sorts has always been a part of everyday work of a general/family physician. There is a distinction between public/population registries on the one hand, and internal, local registries on the other hand. Local registries refer to the catchment population of a particular general/family practice. While keeping population-registries has become a routine with a high level of uniformity in collecting, delivering, recording, analyzing and controlling information, there are no recommendations or standards for keeping local registries, although their importance as well as indisputable necessity have been recognized. They are invaluable for providing an insight into the condition and history of a particular disease in a particular area, planning and taking preventive measures and activities, supervising therapy and medical treatment, as well as for statistical analyses and scientific studies. The most important registry in the field of general practice is the one called "List of health care under the supervision of chosen general/family physicians", which can serve as an index for any other individual record or record of diseases by name kept at a particular general/family practice. Although local registries have "evolved" from notebooks into modern informatic databases, the problem of up-to-dateness cannot be solved until the whole health care system has been connected for competent and authorized persons to be able to record changes of data where and when they take place.
... 50 Wildlife and Fisheries 8 2010-10-01 2010-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...
Ferreira Pires, Luis; Oostrum, van Arjen; Wijnhoven, Fons; Wang, J.
A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues, wh
Full Text Available Background: Central registry in psychiatry is being practiced in few countries and has been found useful in research and clinical management. Role of central registry has also expanded over the years. Materials and Methods: All accessible internet database Medline, Scopus, Embase were accessed from 1990 till date. Available data were systematically reviewed in structured manner and analyzed. Results: Central registry was found useful in epidemiological analysis, association studies, outcome studies, comorbidity studies, forensic issue, effective of medication, qualitative analysis etc., Conclusion: Central registry proves to be effective tool in quantitative and qualitative understanding of psychiatry practice. Findings of studies from central registry can be useful in modifying best practice and evidence based treatment in psychiatry.
da Cunha-Bang, Caspar; Geisler, Christian Hartmann; Enggaard, Lisbeth;
, and for decision on treatment initiation as well as characteristics included in the CLL International Prognostic Index are collected. DESCRIPTIVE DATA: To ensure full coverage of Danish CLL patients in the registry, both continuous queries in case of missing data, and cross-referencing with the Danish National......, 3,082 patients have been registered. CONCLUSION: The Danish National CLL Registry is based within the Danish National Hematology Database. The registry covers a cohort of all patients diagnosed with CLL in Denmark since 2008. It forms the basis for quality assessment of CLL treatment in Denmark......AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate...
... cancer Non-Hodgkin lymphoma Ovarian cancer Pancreatic cancer Testicular cancer Thyroid cancer Uterine cancer Symptoms Symptoms of cancer ... tumor Obesity Pancreatic cancer Prostate cancer Stomach cancer Testicular cancer Throat or larynx cancer Thyroid cancer Patient Instructions ...
Jørgensen, Marit Eika; Kristensen, Jette K.; Husted, Gitte Reventlov
Aim of the database: The aim of the Danish Adult Diabetes Registry (DADR) is to provide data from both the primary health care sector (general practice [GP]) and the secondary sector (specialized outpatient clinics) to assess the quality of treatment given to patients with diabetes. The indicators...... represent process and outcome indicators selected from the literature. Study population: The total diabetes population in Denmark is estimated to be ∼300,000 adult diabetes patients. Approximately 10% have type 1 diabetes, which is managed mainly in the secondary sector, and 90% have type 2 diabetes......, glucose-, blood pressure-, and lipid-lowering treatment (yes/no), insulin pump treatment (yes/ no), and date of last eye and foot examination. Descriptive data: In 2014, the annual report included data regarding over 38,000 patients from outpatient clinics, which is assumed to have included almost all...
Cheung, C Y; Lam, M F; Chu, K H; Chow, K M; Tsang, K Y; Yuen, S K; Wong, P N; Chan, S K; Leung, K T; Chan, C K; Ho, Y W; Chau, K F
Manystudies have shown that kidney transplant recipients have a higher incidence of cancers when compared with general population. However, most data on the posttransplant malignancies (PTM) are derived from Western literature and large population-based studies are rare. There is also lack of information about the posttransplant cancer-specific mortality rate. We conducted a population-based study of 4895 kidney transplants between 1972 and 2011, with data from the Hong Kong Renal Registry. Patterns of cancer incidence and mortality in our kidney transplant recipients were compared with those of the general population using standardized incidence ratios (SIRs) and standardized mortality ratios (SMRs) respectively. With 40 246 person-years of follow-up, 299 PTM was diagnosed. The SIR of all cancers was 2.94 (female 3.58 and male 2.58). Non-Hodgkin lymphoma (NHL), kidney, and bladder cancers had the highest SIRs. The overall SMR was 2.3 (female 3.4 and male 1.7) and the highest SMR was NHL. The patterns of PTM differ among countries. Increases in cancer incidence can now translate into similar increases in cancer mortality. NHL is important in our kidney transplant recipients. Strategies in cancer screening in selected patient groups are needed to improve transplant outcomes.
Krol, ADG; Le Cessie, S; Snijder, S; Kluin-Nelemans, JC; Kluin, PM; Noordijk, EM
The Comprehensive Cancer Centre West (CCCW) population based non-Hodgkin's lymphoma (NHL) registry contains information on all newly diagnosed NHL patients living in the region covered by the CCCW. Patients were entered from June 1st 1981 to December 31st 1989. Follow-up is still ongoing, median fol
Full Text Available Background: Breast and cervical cancers are two major cancers among Indian women. Analysis of trends would help in planning and organization of programs for control of these cancers. Objective: The objective of the following study is to compute risk of breast and cervical cancers using updated data from different cancer registries of India and study of its trends. Materials and Methods: Data on incidence rates of breast and cervical cancers were obtained from six major cancer registries of India for the years 1982-2008 and from the recently initiated cancer registries, North Eastern Registries of India with a total of 21 registries. Annual percent change in incidence and risk in terms of one in number of women likely to develop cancer was estimated for both the cancers in various registries. Results: The annual percentage change in incidence ranged from 0.46 to 2.56 and −1.14 to −3.4 for breast and cervical cancers respectively. Trends were significant for both cancers in the registries of Chennai, Bangalore, Mumbai and Delhi except Barshi and Bhopal. North East region showed decrease in risk for breast and cervical cancers whereas increasing trend was observed in Imphal (West and for cervical cancer in Silchar. Conclusion: North Eastern region recorded decline in the incidence of breast cancer which is contrary to the observation in other registries, which showed increase in breast cancer and decline in cervical cancer incidences.
Backus, Amanda; Kolender, Ellen R
Cancer registry departments are using electronic technology to solve the local and national Certified Tumor Registrar (CTR) shortages. As demand for CTRs continues to increase without an accompanied increase in the supply of qualified personnel, cancer registry departments are looking for new solutions to this growing local and national trend. In order to solve this problem, some cancer registries have started using telecommunication to fill the empty positions within their departments. This is the case at Roper St. Francis Healthcare (RSFH) in Charleston, SC, where Cancer Registry Manager, Ellen Kolender, RHIA, CTR, used telecommuting to fill one full-time and one part-time CTR position.
Abstract Background For years the Robert Koch Institute (RKI) has been annually pooling and reviewing the data from the German population-based cancer registries and evaluating them together with the cause-of-death statistics provided by the statistical offices. Traditionally, the RKI periodically estimates the number of new cancer cases in Germany on the basis of the available data from the regional cancer registries in which registration is complete; this figure, in turn, forms the basis fo...
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of sites that link to...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil...
Kristensen, Anders Elgaard; Larsen, Jacob Moesgaard; Nielsen, Jens Cosedis
intervention. The validity of the less detailed overall reasons for lead interventions commonly used to report lead performance is also excellent. These findings indicate high registry data quality appropriate for scientific analysis and industry-independent post-marketing surveillance.......AIMS: The validity of registry data on defibrillator lead performance is described only sparsely, despite its clinical importance. This study investigated the validity of defibrillator lead performance registry data in a nationwide and population-based registry. METHODS AND RESULTS: We identified.......9% (95% CI: 85.2-90.2%) with a κ value of 0.82 (95% CI:0.78-0.86) representing an almost perfect match. CONCLUSION: The validity of data on defibrillator lead performance recorded in the DPIR is excellent for the specific types of lead intervention and good for the specific reasons for defibrillator lead...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal...
Full Text Available In response to the growing role of personal support workers (PSWs in the delivery of health care services to Ontarians, the Ontario government has moved forward with the creation of a PSW registry. This registry will be mandatory for all PSWs employed by publicly funded health care employers, and has the stated objectives of better highlighting the work that PSWs do in Ontario, providing a platform for PSWs and employers to more easily access the labour market, and to provide government with information for human resources planning. In this paper we consider the factors that brought the creation of a PSW registry onto the Ontario government’s policy agenda, discuss how the registry is being implemented, and provide an analysis of the strengths and weaknesses of this policy change.
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
... Home For Consumers Consumer Updates Registries Help Inform Medication Use in Pregnancy Share Tweet Linkedin Pin it ... or epilepsy, pregnant women must often take prescription medication. Studies show that most women take at least ...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...
The study investigates the actors in Federal energy policy in Switzerland between 1973 and 2000, along with their motivations and agendas. Promoters and opponents of renewable energy sources addressed the Swiss government, whose reactions are in the focus of this investigation. In the second step, the genesis and implementation of the energy-political foundations is outlined that were to provide a basis for financial incentives to renewable energy sources. After identification of the actors and an outline of the fundamentals of state funding policy, the third stage explains the demands made on the state. The focus is on photovoltaic energy conversion. Finally, concrete measures of the Swiss government for institutionalizing financial incentives for renewable energy sources, especially photovoltaic energy conversion, are gone into, and their effects are investigated. (orig.)
Broeder, Daan; Schuurman, Ineke; Windhouwer, Menzo; Chair), Nicoletta Calzolari (Conference; Choukri, Khalid; Declerck, Thierry; Loftsson, Hrafn; Maegaard, Bente; Mariani, Joseph; Moreno, Asuncion; Odijk, Jan; Piperidis, Stelios
The ISOcat Data Category Registry has been a joint project of both ISO TC 37 and the European CLARIN infrastructure. In this paper the experiences of using ISOcat in CLARIN are described and evaluated. This evaluation clarifies the requirements of CLARIN with regard to a semantic registry to support its semantic interoperability needs. A simpler model based on concepts instead of data categories and a simpler workflow based on community recommendations will address these needs better and offe...
Broeder, Daan; Schuurman, Ineke; Windhouwer, Menzo
The ISOcat Data Category Registry has been a joint project of both ISO TC 37 and the European CLARIN infrastructure. In this paper the experiences of using ISOcat in CLARIN are described and evaluated. This evaluation clarifies the requirements of CLARIN with regard to a semantic registry to support its semantic interoperability needs. A simpler model based on concepts instead of data cate-gories and a simpler workflow based on community recommendations will address these needs better and off...
Full Text Available Betty Tai,1 Lian Hu,2 Udi E Ghitza,1 Steven Sparenborg,1 Paul VanVeldhuisen,2 Robert Lindblad2 1Center for the Clinical Trials Network, National Institute on Drug Abuse, National Institutes of Health, Bethesda, MD, USA; 2The EMMES Corporation, Rockville, MD, USA Abstract: This commentary discusses the need for developing patient registries of substance use disorders (SUD in general medical settings. A patient registry is a tool that documents the natural history of target diseases. Clinicians and researchers use registries to monitor patient comorbidities, care procedures and processes, and treatment effectiveness for the purpose of improving care quality. Enactments of the Affordable Care Act 2010 and the Mental Health Parity and Addiction Equity Act 2008 open opportunities for many substance users to receive treatment services in general medical settings. An increased number of patients with a wide spectrum of SUD will initially receive services with a chronic disease management approach in primary care. The establishment of computer-based SUD patient registries can be assisted by wide adoption of electronic health record systems. The linkage of SUD patient registries with electronic health record systems can facilitate the advancement of SUD treatment research efforts and improve patient care. Keywords: substance use disorders, primary care, registry, electronic health records, chronic care model
Uldall, P; Michelsen, S I; Topp, M;
Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP...
Ahmed A. Zeeneldin
Full Text Available Registering clinical trials (CTs in public domains enhances transparency, increases trust in research, improves participation and safeguards against publication bias. This work was done to study the profile of clinical research in Egypt in three CT registries with different scopes: the WHO International CT Registry Platform (ICTRP, the continental Pan-African CT Registry (PACTR and the US clinicaltrials.gov (CTGR. In March 2014, ICTRP, PACTR and CTGR were searched for clinical studies conducted in Egypt. It was found that the number of studies conducted in Egypt (percentage was 686 (0.30% in ICTRP, 56 (11.3% in PACTR and 548 (0.34% in CTGR. Most studies were performed in universities and sponsored by university/organization, industry or individual researchers. Inclusion of adults from both genders predominated. The median number of participants per study in the three registries ranged between 63 and 155. The conditions researched differed among the three registries and study purpose was mostly treatment followed by prevention. Endpoints were mostly efficacy followed by safety. Observational:Interventional studies (i.e. clinical trials represented 15.5%:84.5% in ICTRP, 0%:100% in PACTR and 16.4%:83.6% in CTGR. Most interventions were drugs or procedures. Observational studies were mostly prospective and cohort studies. Most CTs were phase 3 and tested drugs or procedures. Parallel group assignment and random allocation predominated. Blinding was implemented in many of trials and was mostly double-blind. We conclude that CTs from Egypt in trial registries are apparently low and do not accurately reflect clinical research conducted in Egypt or its potential. Development of an Egyptian CT registry is eagerly needed. Registering all Egyptian CTs in public domains is highly recommended.
Klaiman, Tamar; Pracilio, Valerie; Kimberly, Laura; Cecil, Kate; Legnini, Mark
Policy makers, payers, and the general public are increasingly focused on health care quality improvement. Measuring quality requires robust data systems that collect data over time, can be integrated with other systems, and can be analyzed easily for trends. The goal of this project was to study effective tools and strategies in the design and use of clinical registries with the potential to facilitate quality improvement, value-based purchasing, and public reporting on the quality of care. The research team worked with an expert panel to define characteristics of effectiveness, and studied examples of effective registries in cancer, cardiovascular care, maternity, and joint replacement. The research team found that effective registries were successful in 1 or more of 6 key areas: data standardization, transparency, accuracy/completeness of data, participation by providers, financial sustainability, and/or providing feedback to providers. The findings from this work can assist registry designers, sponsors, and researchers in implementing strategies to increase the use of clinical registries to improve patient care and outcomes.
Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y
The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports.
Hurley, Donna S; Sukal-Moulton, Theresa; Gaebler-Spira, Deborah; Krosschell, Kristin J; Pavone, Larissa; Mutlu, Akmer; Dewald, Julius PA; Msall, Michael E
The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems. Method A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification. Results Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors. Interpretation CP registries and surveillance programs, including novel non-traditional ones
Duan, Haiping; Ning, Feng; Zhang, Dongfeng; Wang, Shaojie; Zhang, Dong; Tan, Qihua; Tian, Xiaocao; Pang, Zengchang
In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants of metabolic disorders and health behaviors during puberty and young adulthood. Adult twins have been sampled for studying heritability of multiple phenotypes associated with metabolic disorders. In addition, an elderly twin cohort has been recruited with a focus on genetic studies of aging-related phenotypes using twin modeling and genome-wide association analysis. Cross-cultural collaborative studies have been carried out between China, Denmark, Finland, and US cohorts. Ongoing data collection and analysis for the Qingdao Twin Registry will be discussed in this article.
Mann, Steven A; McCleskey, Brandi; Marques, Marisa B; Adamski, Jill
Apheresis was first performed as a therapeutic procedure in the 1950s. The first national therapeutic apheresis (TA) registry was established in Canada in 1981 and other national registries followed, including two attempts at establishing an international TA registry. There is no national registry in the United States. Our large, academic, tertiary hospital has a very active TA service. We created a TA database to track all procedures performed by the apheresis service by transferring data from paper appointment logs and the electronic medical records into a Microsoft Access database. Retrospective data from each TA procedure performed at UAB from January 1, 2003 through December 31, 2012 were entered, including the type of procedure, indication, date, and patient demographics. Microsoft Excel was used for data analysis. During the 10-year period, our TA service treated 1,060 patients and performed 11,718 procedures. Of these patients, 70% received therapeutic plasma exchange (TPE), 21% received extracorporeal photopheresis (ECP), 4.5% received red cell exchange (RCE), 4.2% received leukocytapheresis, and 0.6% underwent platelet depletion. Among the procedures, 54% were TPEs, 44% were ECPs, 1.3% were RCEs, 0.5% were leukocytaphereses, and 0.1% were platelet depletions. According to the current literature, national and international TA use is underreported. We believe that the UAB TA registry provides useful information about TA practices in our region and can serve as a model for other institutions. Furthermore, data from multiple institutional registries can be used for clinical research to increase the available evidence for the role of TA in various conditions. J. Clin. Apheresis 31:516-522, 2016. © 2015 Wiley Periodicals, Inc.
The author stresses the importance of DPCM 10 December 2002 no.308, which determines the format and the rules to fill the registry for the cases of asbestos-related mesothelioma, according to art 36, comma 3, DLgs 277/91. The Author admits the usefulness of such a registry, but comments that its official approval came very late, because it actually was started in 1993 by ISPESL (The Higher Institute for Prevention and Safety of Labor), after the approval of DLgs 277/91. According to ISPESL initiative, all cases of mesothelioma and related circumstances were (and are) collected through a periferal information net operated by COR's.
Background: Peutz-Jeghers syndrome (PJS) is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. Methods: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. Results and discussion: 25 cases in 11 unrelated families were registered (15 males, 10 females). The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. Conclusion: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation. © 2013 Tchekmedyian et al.
Full Text Available BACKGROUND: Peutz-Jeghers syndrome (PJS is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. METHODS: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. RESULTS AND DISCUSSION: 25 cases in 11 unrelated families were registered (15 males, 10 females. The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. CONCLUSION: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation.
@@ Introduction The mission of the WHO Intemational Clinical Trials Registry Platform is to ensure that a complete view of research is accessible to all those involved in health care decision making.This will improve research transparency and will ultimately strengthen tha validity and value of the scientific evidence base.The registration of all interventional trials is a scientific, ethical and moral responsibility.
Full Text Available BACKGROUND: The design and construction of novel biological systems by combining basic building blocks represents a dominant paradigm in synthetic biology. Creating and maintaining a database of these building blocks is a way to streamline the fabrication of complex constructs. The Registry of Standard Biological Parts (Registry is the most advanced implementation of this idea. METHODS/PRINCIPAL FINDINGS: By analyzing inclusion relationships between the sequences of the Registry entries, we build a network that can be related to the Registry abstraction hierarchy. The distribution of entry reuse and complexity was extracted from this network. The collection of clones associated with the database entries was also analyzed. The plasmid inserts were amplified and sequenced. The sequences of 162 inserts could be confirmed experimentally but unexpected discrepancies have also been identified. CONCLUSIONS/SIGNIFICANCE: Organizational guidelines are proposed to help design and manage this new type of scientific resources. In particular, it appears necessary to compare the cost of ensuring the integrity of database entries and associated biological samples with their value to the users. The initial strategy that permits including any combination of parts irrespective of its potential value leads to an exponential and economically unsustainable growth that may be detrimental to the quality and long-term value of the resource to its users.
Werner, Claudius; Lablans, Martin; Ataian, Maximilian
Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an u...
Treffert, Darold A; Rebedew, David L
A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.
... 42 Public Health 5 2010-10-01 2010-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...
Dijk, WA; Kingma, T; Hooijschuur, CAM; Dassen, WRM; Hoorntje, JCA; van Gelder, LM
This paper deals with the validation of the information stored in the Netherlands central pacemaker patient database. At this moment the registry database contains information on more than 70500 patients, 85000 pacemakers and 90000 leads. The validation procedures consisted of an internal consistenc
Rasmussen, Jeppe V; Olsen, Bo S; Fevang, Bjørg-Tilde S
The aim was to review the funding, organization, data handling, outcome measurements, and findings from existing national shoulder and elbow joint replacement registries; to consider the possibility of pooling data between registries; and to consider wether a pan european registry might be feasible....
... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...
Full Text Available Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR with a joint collaboration of the Social Security Organization (SSO and academic research departments considering the requirements of the Iran’s Ministry of Health and Education.
Matias Riihimäki; Akseli Hemminki; Jan Sundquist; Kari Hemminki
Investigating epidemiology of metastatic colon and rectal cancer is challenging, because cancer registries seldom record metastatic sites. We used a population based approach to assess metastatic spread in colon and rectal cancers. 49,096 patients with colorectal cancer were identified from the nationwide Swedish Cancer Registry. Metastatic sites were identified from the National Patient Register and Cause of Death Register. Rectal cancer more frequently metastasized into thoracic organs (OR ...
Mensi, Carolina; Sieno, Claudia; Consonni, Dario; Riboldi, Luciano
The sinonasal cancer (SNC) are a rare tumors characterized by high occupational etiologic fraction. For this reason their incidence and etiology can be actively monitored by a dedicated cancer registry. The National Registry of these tumours is situated at the Italian Institute for Occupational Safety and Prevention (ISPESL) and is based on Regional Operating Centres (ROCs). In Lombardy Region the ROC has been established at the end of 2007 with the purpose to make a systematic surveillance and therefore to support in the most suitable way the scientific research and the prevention actions in the high risk working sectors. The aims of this surveillance are: to estimate the regional incidence of SNC, to define different sources of occupational and environmental exposure both known (wood, leather, nickel, chromium) and unknown. The registry collects all the new incident cases of epithelial SNC occurring in residents in Lombardy Region since 01.01.2008. The regional Registry is managed according to National Guidelines. Until January 2010 we received 596 cases of suspected SNC; only 91 (15%) of these were actually incident cases according to the inclusion criteria of the Registry, and they were preferentially adenocarcinoma and squamous carcinoma. In 2008 the regional age-standardized incidence rate of SNC for males and females, respectively, is 0.8 and 0.5 per 100,000. Occupational or environmental exposure to wood or leather dust is ascertained in over the 50% of cases. The occupational exposure to leather dust was duo to work in shoe factories. Our preliminary findings confirm that occupational exposure to wood and leather dusts are the more relevant risk factors for SNC. The study of occupational sectors and job activity in cases without such exposure could suggest new etiologic hypothesis.
Gatz, Margaret; Harris, Jennifer R.; Kaprio, Jaakko; McGue, Matt; Smith, Nicholas L.; Snieder, Harold; Spiro, Avron; Butler, David A.
The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved clini
Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.
Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.
The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.
B.K. Edwards (Brenda); E. Ward (Elizabeth); B.A. Kohler (Betsy); C. Eheman (Christie); A. Zauber (Ann); R.N. Anderson (Robert); A. Jemal (Ahmedin); M.J. Schymura (Maria); I. Lansdorp-Vogelaar (Iris); L.C. Seeff (Laura); M. van Ballegooijen (Marjolein); S.L. Goede (Luuk); L.A.G. Ries (Lynn)
textabstractBACKGROUND. The American Cancer Society, the Centers for Disease Control and Prevention (CDC), the National Cancer Institute (NCI), and the North American Association of Central Cancer Registries (NAACCR) collaborate annually to provide updated information regarding cancer occurrence and
Bak, Marie; Ibfelt, Else Helene; Stauffer Larsen, Thomas;
AIM: The Danish National Chronic Myeloid Neoplasia Registry (DCMR) is a population-based clinical quality database, introduced to evaluate diagnosis and treatment of patients with chronic myeloid malignancies. The aim is to monitor the clinical quality at the national, regional, and hospital...... of follow-up. The forms include variables that describe clinical/paraclinical assessments, treatment, disease progression, and survival - disease-specific variables - as well as variables that are identical for all chronic myeloid malignancies. DESCRIPTIVE DATA: By the end of 2014, the DCMR contained data...... on 2,690 patients with an inclusion rate of ∼500 patients each year. Since the registry was established, annual reports have shown consistently high national coverage and data completeness, ≥90% and ≥88%, respectively. CONCLUSION: The DCMR is a national database used for monitoring the quality...
Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans Henrik;
-CCTR, showed that coronary CT angiographies accounted for only 23% of all nonregistered cardiac CTs, indicating >90% completeness of coronary CT angiographies in the WDHR-CCTR. The completeness of individual variables varied substantially (range: 0%-100%), but was >85% for more than 70% of all variables. Using......BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...... expected numbers; and 4) positive predictive values as well as negative predictive values of 19 main patient and procedure variables. RESULTS: By December 31, 2012, almost 22,000 cardiac CTs with up to 40 variables for each procedure have been registered. Of these, 87% were coronary CT angiography...
Full Text Available Abstract Background Citizens, patients and their representatives are increasingly insisting on working with health professionals to organize and discuss research protocols. The International Committee of Medical Journal Editors recommended setting up a public clinical trial registry where anyone can find key information about a trial. Around the world, governments have, in fact, now begun to legislate mandatory disclosure of all clinical trials. The aims of the present survey were to assess the availability of clinical trial registries for Italian citizens and to examine the transparency of the data items reported. Methods The availability of open-access clinical trial registries was surveyed on a sample of 182 websites, including research institutes and centers of excellence (IRCCS-teaching hospitals, hospitals and associations. For each registry we downloaded a sample of two trials to assess the correspondence of the data items reported. Results from the Italian and international registries were compared. Results Fifteen percent of the sample had an open-access registry of clinical trials. Comparison of the data items available, in terms of completeness and transparency, from institutional and international registries indicated wide variability. Conclusions Italian citizens, patients and their associations have scant access to local registries of clinical trials, and international registries are generally more informative. On the European level, advocacy and lobby actions are needed among citizens and patients to boost the diffusion of open-access clinical trial registries without language barriers, thereby facilitating participation, access to information, and the coordination of clinical research.
Regarding registration and publication of clinical trials, there are now three registry organizations in Japan; the University Hospital Medical Information Network (UMIN), the Japan Pharmaceutical Information Center (JAPIC) and the Japan Medical Association - Center for Clinical Trials (JMACCT). In addition, a portal site which supports searching for information on clinical trials in all three registries has been operated by the National Institute of Public Health (NIPH). After we established a cooperative system, we became a WHO Primary Registry on October 16, 2008 and announced this in Japan on the next day. This cooperation system is called the Japan Primary Registries Network (JPRN). In order to show that this type of network works well as a Primary Registry, we are cooperating with global activities of World Health Organization's International Clinical Trial Registry Platform (WHO ICTRP) to promote clinical trials and propose appropriate idea to the world.
Campbell, J; Jaggon, J R; Johnson, P; Bruce, C; Eldemire-Shearer, D
In March 2010, the first intracranial tumour registry (ITR) in the English-speaking Caribbean was started at the University Hospital of the West Indies (UHWI). This was deemed necessary as the already established Jamaica Cancer Registry only reports on malignant brain tumours. The ITR will collect data on all prospective intracranial tumours, benign and malignant, which are diagnosed histologically at the UHWI. Retrospective information dating back five years was also collected. Data collected so far reveal that between the years 2006 to 2010, a total of 317 cases were entered into the database. Of these, only 45 cases were considered eligible. The issues surrounding this discrepancy are discussed in this paper along with the many challenges experienced in the establishment of the ITR. From these experiences, the authors have also put forward several recommendations that may be useful to other researchers who wish to implement similar systems.
AIM OF DATABASE: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. STUDY POPULATION: DNOR has...... advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. CONCLUSION: The establishment of DNOR has optimized the quality...
Full Text Available Jannet Svensson,1 Charlotte Cerqueira,2 Per Kjærsgaard,3 Lene Lyngsøe,4 Niels Thomas Hertel,5 Mette Madsen,6 Henrik B Mortensen,1 Jesper Johannesen1 1Pediatric and Adolescent Department, Copenhagen University Hospital, Herlev and Gentofte, Herlev, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, 3Pediatric Department, County Hospital Herning, Herning, 4Pediatric and Adolescent Department, Nordsjællands Hospital, Hillerød, 5HC Andersen Childrens Hospital, Odense University Hospital, Odense, 6Pediatric Department, Aalborg University Hospital, Aalborg, Denmark Aim: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. Study population: The study population consists of all children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (<18 years of age will be included. Main variables: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis. Descriptive data: The number of children diagnosed with diabetes is increasing with ~3% per year mainly for type 1 diabetes (ie, 296 new patients <15 years of age were diagnosed in 2014. The disease management has changed dramatically with more children treated intensively with multiple daily injections, insulin pumps
Jabour, Abdulrahman M.
Introduction: Cancer registries collect tumor-related data to monitor incident rates and support population-based research. A common concern with using population-based registry data for research is reporting timeliness. Data timeliness have been recognized as an important data characteristic by both the Centers for Disease Control and Prevention…
... Protection and Quarantine Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA... of interest. FOR FURTHER INFORMATION CONTACT: For information on the PPQ Stakeholder Registry... Protection and Quarantine (PPQ) stakeholder registry is an email subscription service that allows...
High-Dose Chemotherapy and Autologous Hematopoietic Stem Cell Transplantation as Adjuvant Treatment in High-Risk Breast Cancer: Data from the European Group for Blood and Marrow Transplantation Registry.
Martino, Massimo; Lanza, Francesco; Pavesi, Lorenzo; Öztürk, Mustafa; Blaise, Didier; Leno Núñez, Rubén; Schouten, Harry C; Bosi, Alberto; De Giorgi, Ugo; Generali, Daniele; Rosti, Giovanni; Necchi, Andrea; Ravelli, Andrea; Bengala, Carmelo; Badoglio, Manuela; Pedrazzoli, Paolo; Bregni, Marco
The aim of this retrospective study was to assess toxicity and efficacy of adjuvant high-dose chemotherapy (HDC) and autologous hematopoietic stem cell transplantation (AHSCT) in 583 high-risk breast cancer (BC) patients (>3 positive nodes) who were transplanted between 1995 and 2005 in Europe. All patients received surgery before transplant, and 55 patients (9.5%) received neoadjuvant treatment before surgery. Median age was 47.1 years, 57.3% of patients were premenopausal at treatment, 56.5% had endocrine-responsive tumors, 19.5% had a human epidermal growth factor receptor 2 (HER2)-negative tumor, and 72.4% had ≥10 positive lymph nodes at surgery. Seventy-nine percent received a single HDC procedure. Overall transplant-related mortality was 1.9%, at .9% between 2001 and 2005, whereas secondary tumor-related mortality was .9%. With a median follow-up of 120 months, overall survival and disease-free survival rates at 5 and 10 years in the whole population were 75% and 64% and 58% and 44%, respectively. Subgroup analysis demonstrated that rates of overall survival were significantly better in patients with endocrine-responsive tumors, <10 positive lymph nodes, and smaller tumor size. HER2 status did not affect survival probability. Adjuvant HDC with AHSCT has a low mortality rate and provides impressive long-term survival rates in patients with high-risk BC. Our results suggest that this treatment modality should be considered in selected high-risk BC patients and further investigated in clinical trials.
Mortensen, Jan Helge Seglem; Øyen, Nina; Fomina, Tatiana; Melbye, Mads; Tretli, Steinar; Vollset, Stein Emil; Bjørge, Tone
Background: There is evidence that increased intake of folate protects against the development of several types of cancer. Some studies have, however, raised concern about the safety of folate in relation to cancer risk. Here we examined the risk of maternal cancer after intake of supplemental folic acid in pregnancy. Methods: This is a population-based cohort study comprising 429,004 women with data from the Medical Birth Registry of Norway, the Cancer Registry of Norway, and other nation...
Kremer, Joel M
The Corrona US national registry collects data concerning patient status from both the rheumatologist and patient at routine clinical encounters. Corrona has functioning disease registries in rheumatoid arthritis, psoriatic arthritis, spondyloarthropathies, psoriasis and inflammatory bowel disease. Corrona merges data concerning long-term effectiveness and safety, as well as comparative and cost effectiveness of agents to treat these autoimmune diseases.
Ostgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Severinsen, Marianne Tang;
The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data.......The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data....
V.S. Stel; A. Kramer; C. Zoccali; K.J. Jager
Introduction: This paper provides a summary of the 2006 European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry report. Methods: Data on renal replacement therapy (RRT) were available from 50 national and regional registries in 28 countries in Europe and bordering
Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A
Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an u
Gottschau, Mathilde; Mellemkjaer, Lene; Hannibal, Charlotte G;
INTRODUCTION: The Nordic countries are areas with a high-incidence of ovarian cancer; however, differences between the countries exist. MATERIAL AND METHODS: We used the Danish Cancer Registry to identify 11 264 cases of ovarian cancer and 363 cases of tubal cancer during 1993-2013. We calculated...
Di, L.; Bai, Y.; Shen, D.; Shao, Y.; Shrestha, R.; Wang, H.; Nebert, D. D.
Petabytes of Earth science data have been accumulated through space- and air-borne Earth observation programs during the last several decades. The data are valuable both scientifically and socioeconomically. The value of these data could be further increased significantly if the data from these programs can be easily discovered, accessed, integrated, and analyzed. The Global Earth Observation System of Systems (GEOSS) is addressing this need. Coordinated by the Group on Earth Observations (or GEO), a voluntary partnership of 86 governments, the European Commission, and 61 intergovernmental, international, and regional organizations has been working on implementing GEOSS for a number of years. After four years of international collaboration, the GEOSS Common Infrastructure (GCI) has been established. GCI consists of the Standards and Interoperability Registry (SIR), the Component and Service Registry (CSR), the GEO clearinghouse, and the GEO Portal. The SIR maintains the list of the public standards recognized by the GEO. CSR provides a centralized registry for available Earth Observation resources. The GEO clearinghouse works as a single search facility for GEOSS-wide resources and the GEO Portal provides an integrated Web-based interfaces for users. Since January 2007, researchers at CSISS, GMU have collaborated with officials from the Federal Geographic Data Committee (FGDC) on designing, implementing, maintaining, and upgrading CSR. Currently CSR provides the following capabilities for data providers: user registration, resource registration, and service interface registration. The CSR clients can discover the resources registered in CSR through OGC Catalog for Web (CSW), UUDI, and other standard interfaces. During the resource registration process, providers may define detailed descriptive information for their resources, in particular, the targeted societal benefit area and sub-areas of focus, and the targeted critical Earth Observations. The service
Andersen, Nis; Hjortdal, Jesper Østergaard; Schielke, Katja Christina;
AIM OF DATABASE: To monitor the development of diabetic eye disease in Denmark and to evaluate the accessibility and effectiveness of diabetic eye screening programs with focus on interregional variations. TARGET POPULATION: The target population includes all patients diagnosed with diabetes....... Denmark (5.5 million inhabitants) has ~320,000 diabetes patients with an annual increase of 27,000 newly diagnosed patients. The Danish Registry of Diabetic Retinopathy (DiaBase) collects data on all diabetes patients aged ≥18 years who attend screening for diabetic eye disease in hospital eye departments...... and in private ophthalmological practice. In 2014-2015, DiaBase included data collected from 77,968 diabetes patients. MAIN VARIABLES: The main variables provide data for calculation of performance indicators to monitor the quality of diabetic eye screening and development of diabetic retinopathy. Data...
Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per
classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy...... experiencing severe hypoglycemia, diabetic nephropathy, and retinopathy. CONCLUSION: The systematic collection of data in DanDiabKids documents improved quality of care over the last 12 years, despite a substantial increase in the number of patients cared for by pediatric departments in Denmark, fulfilling......AIM: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids) are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. STUDY POPULATION: The study population consists of all...
Hallman, William K.; Kipen, Howard M.; Diefenbach, Michael; Boyd, Kendal; Kang, Han; Leventhal, Howard; Wartenberg, Daniel
Objectives. We identify symptom patterns among veterans who believe they suffer from Gulf War–related illnesses and characterize groups of individuals with similar patterns. Methods. A mail survey was completed by 1161 veterans drawn from the Gulf War Health Registry. Results. An exploratory factor analysis revealed 4 symptom factors. A K-means cluster analysis revealed 2 groups: (1) veterans reporting good health and few moderate/severe symptoms, and (2) veterans reporting fair/poor health and endorsing an average of 37 symptoms, 75% as moderate/severe. Those in Cluster 2 were more likely to report having 1 or more of 24 medical conditions. Conclusions. These findings are consistent with previous investigations of symptom patterns in Gulf War veterans. This multisymptom illness may be more fully characterized by the extent, breadth, and severity of symptoms reported. PMID:12660208
Wright, S. E.; Windhouwer, Menzo; Schuurman, I.; Broeder, D.
International audience; The terminology Community of Practice has long standardized data categories in the framework of ISO TC 37. ISO 12620:2009 specifies the data model and procedures for a Data Category Registry (DCR), which has been implemented by the Max Planck Institute for Psycholinguistics as the ISOcat DCR. The DCR has been used by not only ISO TC 37, but also by the CLARIN research infrastructure. This paper describes how the needs of these communities have started to diverge and th...
Paolucci, P; Dini, G; Dallorso, S; Meloni, G; Arcese, W; Porta, F; Bonetti, F; Uderzo, C; Locasciulli, A; Andolina, M
A multicenter cooperative group has been activated in Italy in 1986, with the aim of focusing on the following issues: to standardize perspectively the approach to bone marrow transplantation (BMT) in pediatric centers granting the recommendations of the Associazione Italiana di Ematologia e Oncologia Pediatrica (AIEOP); to study effects and toxicity of preparative regimens to BMT; to evaluate the special features of BMT in children, such as clinical management, care and late effects, as peculiar issues of a pediatric setting. Indeed, one of the major aims of the group is to attempt to address in the most appropriate ways, such as in children only and at a nation-wide level, the most crucial questions about the real role of BMT, taking advantage from the fact that most of the children with cancer undergoing BMT in Italy have been treated homogeneously before transplant, i.e. according to AIEOP protocols (70%). Accordingly, specific information were recorded by means of problem oriented forms, aimed to generate a full registry. The registry has been collecting the experiences of 10 pediatric hematology and oncology centers where children eligible for BMT were registered and/or where BMT was performed. This paper was meant both to summarize the 4 years activity of the registry and to analyze what we have learnt so far, as well as what may be suggested to design our future strategies by presently available although retrospective data. It is concluded that the pediatric BMT registry we set up appears useful and of growing interest and potential relevance.
Jardim, Paulo César Brandão Veiga; de Souza, Weimar Kunz Sebba Barroso; Lopes, Renato Delascio; Brandão, Andréa Araújo; Malachias, Marcus V. Bolívar; Gomes, Marco Mota; Moreno Júnior, Heitor; Barbosa, Eduardo Costa Duarte; Póvoa, Rui Manoel dos Santos
Background: A registry assessing the care of hypertensive patients in daily clinical practice in public and private centers in various Brazilian regions has not been conducted to date. Such analysis is important to elucidate the effectiveness of this care. Objective: To document the current clinical practice for the treatment of hypertension with identification of the profile of requested tests, type of administered treatment, level of blood pressure (BP) control, and adherence to treatment. Methods: National, observational, prospective, and multicenter study that will include patients older than 18 years with hypertension for at least 4 weeks, following up in public and private centers and after signing a consent form. The study will exclude patients undergoing dialysis, hospitalized in the previous 30 days, with class III or IV heart failure, pregnant or nursing, with severe liver disease, stroke or acute myocardial infarction in the past 30 days, or with diseases with a survival prognosis < 1 year. Evaluations will be performed at baseline and after 1 year of follow-up. The parameters that will be evaluated include anthropometric data, lifestyle habits, BP levels, lipid profile, metabolic syndrome, and adherence to treatment. The primary outcomes will be hospitalization due to hypertensive crisis, cardiocirculatory events, and cardiovascular death, while secondary outcomes will be hospitalization for heart failure and requirement of dialysis. A subgroup analysis of 15% of the sample will include noninvasive central pressure evaluation at baseline and study end. The estimated sample size is 3,000 individuals for a prevalence of 5%, sample error of 2%, and 95% confidence interval. Results: The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. Conclusion: The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of modifying the prognosis of
Paulo César Brandão Veiga Jardim
Full Text Available Abstract Background: A registry assessing the care of hypertensive patients in daily clinical practice in public and private centers in various Brazilian regions has not been conducted to date. Such analysis is important to elucidate the effectiveness of this care. Objective: To document the current clinical practice for the treatment of hypertension with identification of the profile of requested tests, type of administered treatment, level of blood pressure (BP control, and adherence to treatment. Methods: National, observational, prospective, and multicenter study that will include patients older than 18 years with hypertension for at least 4 weeks, following up in public and private centers and after signing a consent form. The study will exclude patients undergoing dialysis, hospitalized in the previous 30 days, with class III or IV heart failure, pregnant or nursing, with severe liver disease, stroke or acute myocardial infarction in the past 30 days, or with diseases with a survival prognosis < 1 year. Evaluations will be performed at baseline and after 1 year of follow-up. The parameters that will be evaluated include anthropometric data, lifestyle habits, BP levels, lipid profile, metabolic syndrome, and adherence to treatment. The primary outcomes will be hospitalization due to hypertensive crisis, cardiocirculatory events, and cardiovascular death, while secondary outcomes will be hospitalization for heart failure and requirement of dialysis. A subgroup analysis of 15% of the sample will include noninvasive central pressure evaluation at baseline and study end. The estimated sample size is 3,000 individuals for a prevalence of 5%, sample error of 2%, and 95% confidence interval. Results: The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. Conclusion: The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of
Full Text Available Purpose: Reasons for worldwide variability in the burden of primary malignant brain and central nervous system (CNS tumors remain unclear. This study compares the incidence and survival of malignant brain and CNS tumors by selected histologic types between the United States (US and Taiwan. Methods: Data from 2002 to 2010 were selected from two population-based cancer registries for primary malignant brain and CNS tumors: the Central Brain Tumor Registry of the United States (CBTRUS and the Taiwan Cancer Registry. Two registries had similar process of collecting patients with malignant brain tumor and the quality of two registries were comparative. The age-adjusted incidence rate (IR, IR ratio, and survival by histological types, age and gender were used to study regional differences. Results: The overall age-adjusted IRs were 5.91 per 100,000 in the US and 2.68 per 100,000 in Taiwan. The most common histologic type for both countries was glioblastoma with a 12.9% higher proportion in the US than in Taiwan. Glioblastoma had the lowest survival rate of any histology in both countries (US 1-year survival rate = 37.5%; Taiwan 1-year survival rate = 50.3%. The second largest group was astrocytoma, excluding glioblastoma and anaplastic astrocytoma, with the distribution being slightly higher in Taiwan than in the US. Conclusions: Our findings revealed differences by histological type and grade of primary malignant brain and CNS tumors between two sites.
Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude
anomalies covered by their region. Associate members transmit aggregate case counts for each EUROCAT anomaly subgroup by year and by type of birth. This article describes the organization and activities of each of the current 29 full member and 6 associate member registries of EUROCAT.......EUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital...
Nielsen, Lars Hougaard; Løkkegaard, Ellen; Andreasen, Anne Helms;
PURPOSE: Many studies which investigate the effect of drugs categorize the exposure variable into never, current, and previous use of the study drug. When prescription registries are used to make this categorization, the exposure variable possibly gets misclassified since the registries do not ca...... with Hazard Ratios ranging from 1.68 to 1.78 for current use compared to never use. CONCLUSIONS: The findings suggest that it is possible to estimate the effect of never, current and previous use of HT on breast cancer using prescription data.......PURPOSE: Many studies which investigate the effect of drugs categorize the exposure variable into never, current, and previous use of the study drug. When prescription registries are used to make this categorization, the exposure variable possibly gets misclassified since the registries do...... not carry any information on the time of discontinuation of treatment.In this study, we investigated the amount of misclassification of exposure (never, current, previous use) to hormone therapy (HT) when the exposure variable was based on prescription data. Furthermore, we evaluated the significance...
Full Text Available Nis Andersen,1,2 Jesper Østergaard Hjortdal,1,3 Katja Christina Schielke,4 Toke Bek,3 Jakob Grauslund,5 Caroline Schmidt Laugesen,6 Henrik Lund-Andersen,7 Charlotte Cerqueira,8 Jens Andresen2 1Danish Ophthalmological Society, Copenhagen, 2Organization of Danish Ophthalmologists in Private Practice, Copenhagen, 3Department of Ophthalmology, Aarhus University Hospital, Aarhus, 4Department of Ophthalmology, Aalborg University Hospital, Aalborg, 5Department of Ophthalmology, Odense University Hospital, Odense, 6Department of Ophthalmology, Copenhagen University Hospital Roskilde, Roskilde, 7Department of Ophthalmology, Glostrup Hospital, 8Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Rigshospitalet – Glostrup, University of Copenhagen, Copenhagen, Denmark Aim of database: To monitor the development of diabetic eye disease in Denmark and to evaluate the accessibility and effectiveness of diabetic eye screening programs with focus on interregional variations.Target population: The target population includes all patients diagnosed with diabetes. Denmark (5.5 million inhabitants has ~320,000 diabetes patients with an annual increase of 27,000 newly diagnosed patients. The Danish Registry of Diabetic Retinopathy (DiaBase collects data on all diabetes patients aged ≥18 years who attend screening for diabetic eye disease in hospital eye departments and in private ophthalmological practice. In 2014–2015, DiaBase included data collected from 77,968 diabetes patients.Main variables: The main variables provide data for calculation of performance indicators to monitor the quality of diabetic eye screening and development of diabetic retinopathy. Data with respect to age, sex, best corrected visual acuity, screening frequency, grading of diabetic retinopathy and maculopathy at each visit, progression/regression of diabetic eye disease, and prevalence of blindness were obtained. Data
Tey, J; Baggarley, S; Lee, KM
Singapore is a small country, but it is ideally and centrally located to conveniently serve not only its population but also patients from the surrounding regions. It’s economy is sufficiently strong to maintain highly sophisticated and expensive equipment to manage a high level of healthcare, including oncology services. Cancer incidences in Singapore are on an upward trend based on the report of the Singapore Cancer Registry for the period of 2001-2005. Cancer is the number one cause of dea...
individual, either overall or for the trait(s) of particular interest. Germ line: The cell lineage resulting in eggs or sperm. Haplotype : A set of closely...relief, no more uncertainty. e. adjustment 1/ challenge of living with a debilitating disease 2/ stages of grief. d) Sickle Cell 1. Woodridge & Murray...share the same haplotype for the mutant BRCA1 allele indicating that her parents are not distantly related. This alteration was not detected in more
Clive, R E
A model for an integrated, comprehensive program for high-quality, cost-effective patient care can be found in cancer programs approved by the Commission on Cancer. A key component in assessing the effectiveness of the model is the cancer registry. Changes in the health care delivery system are behind increased demands for and use of cancer registry data. To support this shift and expanded activity, the Commission on Cancer has instituted a series of initiatives. These steps address refinements of the standards for approval, collaborative relationships, performance measurement information, new educational opportunities, and an organized communications campaign.
Brasso, Klaus; Friis, S; Juel, K;
Computerized linkage between the Danish Cancer Registry and the Central Personal Registry was established. A total of 1459 men aged 55-74 years with newly diagnosed clinically localized prostate cancer in the period 1983-1987 were identified. Routine treatment in this period was observation and e...
Ellesøe, Sabrina Gade; Jensen, Anders Boeck; Ängquist, Lars Henrik
identifier in the Danish registries, thus enabling connection of information from several registries. Utilizing the CPR number, we identified Danish patients with familial CHD and reviewed each patient's file. We compared diagnoses from the registries with those manually assigned, which enabled calculation......BACKGROUND: Congenital heart disease (CHD) occurs in approximately 1% of all live births, and 3% to 8% of these have until now been considered familial cases, defined as the occurrence of two or more affected individuals in a family. The validity of CHD diagnoses in Danish administrative registry...... data has only been studied previously in highly selected patient populations. These studies identified high positive predictive values (PPVs) and recurrence risk ratios (RRRs-ratio between probabilities of CHD given family history of CHD and no family history). However, the RRR can be distorted...
U.S. Environmental Protection Agency — This data provides location and attribute information on all facilities in EPA's Facility Registry Service (FRS) for a internet web feature service . The FRS is an...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...
U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of Waste Water Treatment...
U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...
U.S. Environmental Protection Agency — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS), EPA's Integrated Compliance Information System (ICIS)...
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of Hazardous Waste...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of active hazardous...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...
U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to Facility...
Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...
U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...
U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...
Palma, David; Visser, Otto; Lagerwaard, Frank J.; Belderbos, Jose; Slotman, Ben J.; Senan, Suresh
Purpose Stereotactic body radiotherapy (SBRT) for stage I non-small-cell lung cancer (NSCLC) is associated with high local control rates. The impact of introducing SBRT in patients 75 years of age or older was studied using a population-based cancer registry. Methods The Amsterdam Cancer Registry wa
Christopher J. Ryerson
Full Text Available Background. The relative rarity and diversity of fibrotic interstitial lung disease (ILD have made it challenging to study these diseases in single-centre cohorts. Here we describe formation of a multicentre Canadian registry that is needed to describe the outcomes of fibrotic ILD and to enable detailed healthcare utilization analyses that will be the cornerstone for future healthcare planning. Methods. The Canadian Registry for Pulmonary Fibrosis (CARE-PF is a prospective cohort anticipated to consist of at least 2,800 patients with fibrotic ILD. CARE-PF will be used to (1 describe the natural history of fibrotic ILD, specifically determining the incidence and outcomes of acute exacerbations of ILD subtypes and (2 determine the impact of ILD and acute exacerbations of ILD on health services use and healthcare costs in the Canadian population. Consecutive patients with fibrotic ILD will be recruited from five Canadian ILD centres over a period of five years. Patients will be followed up as clinically indicated and will complete standardized questionnaires at each clinic visit. Prespecified outcomes and health services use will be measured based on self-report and linkage to provincial health administrative databases. Conclusion. CARE-PF will be among the largest prospective multicentre ILD registries in the world, providing detailed data on the natural history of fibrotic ILD and the healthcare resources used by these patients. As the largest and most comprehensive cohort of Canadian ILD patients, CARE-PF establishes a network for future clinical research and early phase clinical trials and provides a platform for translational and basic science research.
Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A
Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required.
Roukis, Thomas S; Prissel, Mark A
Joint arthroplasty registry data are meaningful when evaluating the outcomes of total joint replacement, because they provide unbiased objective information regarding survivorship and incidence of use. Critical evaluation of the registry data information will benefit the surgeon, patient, and industry. However, the implementation and acceptance of registry data for total ankle replacement has lagged behind that of hip and knee implant arthroplasty. Currently, several countries have national joint arthroplasty registries, with only some procuring information for total ankle replacement. We performed an electronic search to identify publications and worldwide registry databanks with pertinent information specific to total ankle replacement to determine the type of prostheses used and usage trends over time. We identified worldwide registry data from 33 countries, with details pertinent to total ankle replacement identified in only 6 countries. The obtained information was arbitrarily stratified into 3 distinct periods: 2000 to 2006, 2007 to 2010, and 2011. Within these study periods, the data from 13 total ankle replacement systems involving 3,980 ankles were identified. The vast majority (97%) of the reported ankle replacements were 3-component, mobile-bearing, uncemented prostheses. Three usage trends were identified: initial robust embracement followed by abrupt disuse, minimal use, and initial embracement followed by sustained growth in implantation. Before the widespread acceptance of new total ankle replacements, the United States should scrutinize and learn from the international registry data and develop its own national joint registry that would include total ankle replacement. Caution against the adoption of newly released prostheses, especially those without readily available revision components, is recommended.
Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P
The Anesthesia Quality Institute (AQI) was chartered in 2008 by the American Society of Anesthesiologists to develop the National Anesthesia Clinical Outcomes Registry (NACOR). In this Technical Communication, we will describe how data enter NACOR, how they are authenticated, and how they are analyzed and reported. NACOR accepts case-level administrative, clinical, and quality capture data from voluntarily participating anesthesia practices and health care facilities in the United States. All data are transmitted to the AQI in summary electronic files generated by billing, quality capture, and electronic health care record software, typically on a monthly basis. All data elements are mapped to fields in the NACOR schema in accordance with a publicly available data dictionary. Incoming data are loaded into NACOR by AQI technologists and are subject to both manual and automated review to identify systematically missing elements, miscoding, and inadvertent corruption. Data are deidentified in compliance with Health Insurance Portability and Accountability Act regulations. The database server of AQI, which houses the NACOR database, is protected by 2 firewalls within the American Society of Anesthesiologists' network infrastructure; this system has not been breached. The NACOR Participant User File, a deidentified case-level dataset of information from NACOR, is available to researchers at participating institutions. NACOR architecture and the nature of the Participant User File include both strengths and weaknesses.
Giampaolo, Adele; Abbonizio, Francesca; Arcieri, Romano; Hassan, Hamisa Jane
In Italy, the surveillance of people with bleeding disorders is based on the National Registry of Congenital Coagulopathies (NRCC) managed by the Italian National Institute of Health (Istituto Superiore di Sanità). The NRCC collects epidemiological and therapeutic data from the 54 Hemophilia Treatment Centers, members of the Italian Association of Hemophilia Centres (AICE). The number of people identified with bleeding disorders has increased over the years, with the number rising from approx. 7000 in 2000 to over 11,000 in 2015. The NRCC includes 4020 patients with hemophilia A and 859 patients with hemophilia B. The prevalence of the rare type 3 vWD is 0.20/100,000 inhabitants. Less common congenital bleeding disorders include the following deficiencies: Factor I (fibrinogen), Factor II (prothrombin), Factor V, Factor VII, Factor X, Factor XI and Factor XIII, which affect 1953 patients. Hepatitis C Virus (HCV) infection affects 1561 patients, more than 200 of whom have two infections (HCV + HIV). Estimated hemophilia-related drug consumption in 2015 was approx. 550 million IU of FVIII for hemophilia A patients and approx. 70 million IU of FIX for hemophilia B patients. The NRCC, with its bleeding disorder data set, is a tool that can provide answers to fundamental questions in public health, monitoring care provision and drug treatment, as well as facilitating clinical and epidemiological research. PMID:28335488
Francone, Marco [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Di Cesare, Ernesto, E-mail: email@example.com [Dipartimento di Scienze Cliniche Applicate e Biotecnologie, Università di L’Aquila (Italy); Cademartiri, Filippo [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pontone, Gianluca [IRCCS Centro Cardiologico Monzino (Italy); Lovato, Luigi [Policlinico S. Orsola Bologna (Italy); Matta, Gildo [Azienda ospedaliera G Brotzu Cagliari (Italy); Secchi, Francesco [IRCCS Policlinico San Donato, Radiology Unit, Milan (Italy); Maffei, Erica [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pradella, Silvia [Azienda Ospedaliera Universitaria Careggi (Italy); Carbone, Iacopo [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Marano, Riccardo [Policlinico Gemelli, Università Cattolica Roma (Italy); Bacigalupo, Lorenzo [Ospedale Galliera, Genova (Italy); Chiodi, Elisabetta [Ospedale S. Anna Ferrara (Italy); Donato, Rocco [Azienda Ospedaliera Universitaria G. Martino, Me (Italy); Sbarbati, Stefano [Ospedale Madre Giuseppina Vannini, Roma (Italy); De Cobelli, Francesco [IRCCS S. Raffaele, Università Vita Salute, Milano (Italy); Di Renzi, Paolo [Fate Bene Fratelli Isola tiberina, Roma (Italy); Ligabue, Guido; Mancini, Andrea [Azienda Ospedaliera-Universitaria Policlinico di Modena (Italy); Palmieri, Francesco [Diparimento di Diagnostica per immagini e radiologia interventistica, Ospedale S. Maria delle Grazie, Pozzuoli, Napoli (Italy); and others
Objectives: Forty sites were involved in this multicenter and multivendor registry, which sought to evaluate indications, spectrum of protocols, impact on clinical decision making and safety profile of cardiac magnetic resonance (CMR). Materials and methods: Data were prospectively collected on a 6-month period and included 3376 patients (47.2 ± 19 years; range 1–92 years). Recruited centers were asked to complete a preliminary general report followed by a single form/patient. Referral physicians were not required to exhibit any specific certificate of competency in CMR imaging. Results: Exams were performed with 1.5 T scanners in 96% of cases followed by 3 T (3%) and 1 T (1%) magnets and contrast was administered in 84% of cases. The majority of cases were performed for the workup of inflammatory heart disease/cardiomyopathies representing overall 55.7% of exams followed by the assessment of myocardial viability and acute infarction (respectively 6.9% and 5.9% of patients). In 49% of cases the final diagnosis provided was considered relevant and with impact on patient's clinical/therapeutic management. Safety evaluation revealed 30 (0.88%) clinical events, most of which due to patient's preexisting conditions. Radiological reporting was recorded in 73% of exams. Conclusions: CMR is performed in a large number of centers in Italy with relevant impact on clinical decision making and high safety profile.
Caplan, Louis R; Wityk, Robert J; Glass, Thomas A; Tapia, Jorge; Pazdera, Ladislav; Chang, Hui-Meng; Teal, Phillip; Dashe, John F; Chaves, Claudia J; Breen, Joan C; Vemmos, Kostas; Amarenco, Pierre; Tettenborn, Barbara; Leary, Megan; Estol, Conrad; Dewitt, L Dana; Pessin, Michael S
Among 407 New England Medical Center Posterior Circulation registry patients, 59% had strokes without transient ischemic attacks (TIAs), 24% had TIAs then strokes, and 16% had only TIAs. Embolism was the commonest stroke mechanism (40% of patients including 24% cardiac origin, 14% intraarterial, 2% cardiac and arterial sources). In 32% large artery occlusive lesions caused hemodynamic brain ischemia. Infarcts most often included the distal posterior circulation territory (rostral brainstem, superior cerebellum and occipital and temporal lobes); the proximal (medulla and posterior inferior cerebellum) and middle (pons and anterior inferior cerebellum) territories were equally involved. Severe occlusive lesions (>50% stenosis) involved more than one large artery in 148 patients; 134 had one artery site involved unilaterally or bilaterally. The commonest occlusive sites were: extracranial vertebral artery (52 patients, 15 bilateral) intracranial vertebral artery (40 patients, 12 bilateral), basilar artery (46 patients). Intraarterial embolism was the commonest mechanism of brain infarction in patients with vertebral artery occlusive disease. Thirty-day mortality was 3.6%. Embolic mechanism, distal territory location, and basilar artery occlusive disease carried the poorest prognosis. The best outcome was in patients who had multiple arterial occlusive sites; they had position-sensitive TIAs during months to years.
Cuerda, C; Parón, L; Planas, M; Gómez Candela, C; Moreno, J M
The registries are databases including information about a treatment or a disease in a definite population. Concerning home artificial nutrition there are registries of patients in different European countries, USA and Japan, collecting data such as the prevalence, indication, follow-up and complications of these treatments. The Spanish group of Home Artificial Nutrition (HAN), NADYA, was established in 1992 with professionals devoted to the practise of artificial nutrition. Since then, one of its wills was the development of the Spanish registry of HAN. This is a voluntary registry accessible through the web page www.nadya-senpe.com. In 2005, this group decided to update the registry according to the Data Protection Law and including other improvements. Thank to the work of all the members of this group we have many data on the practise of HAN in our country. Since 1994, except the years 97-98, the annual registries of patients on home parenteral nutrition and home enteral nutrition have been published periodically, observing an increase in both, the number of patients and collaborating centres, presenting to us the actual practise of HAN in our country.
Thomas B. Richards, MD
Full Text Available Choropleth maps are commonly used in cancer reports and community discussions about cancer rates. Cancer registries increasingly use geographic information system techniques. The Centers for Disease Control and Prevention’s Division of Cancer Prevention and Control convened a Map Work Group to help guide application of geographic information system mapping techniques and to promote choropleth mapping of data from central cancer registries supported by the National Program of Cancer Registries, especially for comprehensive cancer control planning and evaluation purposes. In this 2-part series, we answer frequently asked questions about choropleth map design to display cancer incidence data. We recommend that future initiatives consider more advanced mapping, spatial analysis, and spatial statistics techniques and include usability testing with representatives of state and local programs and other cancer prevention partners.
Thomas B. Richards, MD
Full Text Available Choropleth maps are commonly used in cancer reports and community discussions about cancer rates. Cancer registries increasingly use geographic information system techniques. The Centers for Disease Control and Prevention’s Division of Cancer Prevention and Control convened a Map Work Group to help guide application of geographic information systems mapping techniques and to promote choropleth mapping of data from central cancer registries supported by the National Program of Cancer Registries, especially for planning and evaluation of comprehensive cancer control programs. In this 2-part series in this issue of Preventing Chronic Disease, we answer frequently asked questions about choropleth map design to display cancer incidence data. We recommend that future initiatives consider more advanced mapping, spatial analysis, and spatial statistics techniques, and include usability testing with representatives of state and local programs and other cancer prevention partners.
Brasso, K; Friis, S; Kjaer, S K;
Based on information from the nationwide Danish Cancer Registry, the development in prostate cancer incidence among Danish men under 65 years is reviewed. Changes in incidence rate, clinical stage and the number of possible candidates for radical treatment are discussed....
Bernatsky, Sasha; Ramsey-Goldman, Rosalind; Labrecque, Jeremy
OBJECTIVE: To update estimates of cancer risk in SLE relative to the general population. METHODS: A multisite international SLE cohort was linked with regional tumor registries. Standardized incidence ratios (SIRs) were calculated as the ratio of observed to expected cancers. RESULTS: Across 30 c...
L.M. Hollestein (Loes)
markdownabstract__Abstract__ The incidence of skin cancer is increasing in the Netherlands since 1989, the first year of the Netherlands Cancer Registry (NCR). In 2010 more than 43,000 patients were newly diagnosed with skin cancer in the Netherlands. During a life time at least 1 in 5 persons livi
Caygill, Christine P J; Gatenby, Piers A C; Herceg, Zdenko; Lima, Sheila C S; Pinto, Luis F R; Watson, Anthony; Wu, Ming-Shiang
The following, from the 12th OESO World Conference: Cancers of the Esophagus, includes commentaries on comparative genomic analysis of esophageal cancers: genomic polymorphisms, the genetic and epigenetic drivers in esophageal cancers, and the collection of data in the UK Barrett's Oesophagus Registry.
Hasegawa, Takeshi; Nakai, Shigeru; Moriishi, Misaki; Ito, Yasuhiko; Itami, Noritomo; Masakane, Ikuto; Hanafusa, Norio; Taniguchi, Masatomo; Hamano, Takayuki; Shoji, Tetsuo; Yamagata, Kunihiro; Shinoda, Toshio; Kazama, Junichiro; Watanabe, Yuzo; Shigematsu, Takashi; Marubayashi, Seiji; Morita, Osamu; Wada, Atsushi; Hashimoto, Seiji; Suzuki, Kazuyuki; Kimata, Naoki; Wakai, Kenji; Fujii, Naohiko; Ogata, Satoshi; Tsuchida, Kenji; Nishi, Hiroshi; Iseki, Kunitoshi; Tsubakihara, Yoshiharu; Nakamoto, Hidetomo
Since 2009, the peritoneal dialysis (PD) registry survey has been carried out as part of the annual nationwide survey conducted by the Statistical Survey Committee of the Japanese Society for Dialysis Therapy with the cooperation of the Japanese Society for Peritoneal Dialysis. In this report, the current status of PD patients is presented on the basis of the results of the survey conducted at the end of 2012. The subjects were PD patients who lived in Japan and participated in the 2012 survey. Descriptive analysis of various items was performed, which included the current status of the combined use of PD and another dialysis method such as hemodialysis (HD) or hemodiafiltration (HDF), the method of exchanging dialysate, the use of an automated peritoneal dialysis (APD) machine, and the rates of peritonitis and catheter exit-site infection. From the results of the facility survey in 2012, the number of PD patients was 9514, a decrease of 128 from 2011. Among the entire dialysis patient population, 3.1% were PD patients, a decrease of 0.1%. Among the studied patients, 347 had a peritoneal catheter and underwent peritoneal lavage, 175 were started on PD in 2012 but introduced to other blood purification methods in the same year, and 1932 underwent both PD and another dialysis method such as HD or HDF. The percentage of patients who underwent PD and another dialysis method increased with PD vintage: vintage of ≥2 years. The mean rate of peritonitis was 0.22 per patient per year. The mean rate of catheter exit-site infections was 0.36 per patient per year.
Cercenado, Emilia; Pachón, Jerónimo
The European Cubicin Outcomes Registry and Experience (EUCORE) is an ongoing, retrospective, European, post-marketing, non-comparative database of daptomycin use in patients that have received at least one daptomycin dose. The primary objective is to evaluate the clinical outcomes of patients treated with this drug. This article presents the analysis of patients included in Spanish institutions from January 2006 to March 2010. A total of 726 patients were included: 66% males, 48.6% aged more than 65 years old, and 70% with comorbidities. Daptomycin was administered in the outpatient setting in 20.3% of the patients. More than 50% of the patients received a dose of 6 mg/kg/day and in 80% daptomycin was administered as a rescue therapy. The median treatment duration was 14 days. The infections treated were bacteremia (32.51%), skin and soft tissue infections (31.4%), infectious endocarditis (14.33%), infections associated with prosthetic materials (10.9%), osteoarticular infections (6.1%), and others. Infections were caused by Staphylococcus aureus (40.5%; 14.4% methicilllin-resistant), coagulase-negative staphylococci (34.5%), enterococci (11.7%) and group viridans streptococci (2.9%). The overall rate of clinical success was 78.4% (81.5% when administered as first-line therapy and 77.6% when administered as rescue therapy). In patients with renal failure, the efficacy of daptomycin was lower. At the end of therapy, 8.7% of patients showed a decrease in creatinine clearance, and in 25 patients creatine kinase values were more than 10 times higher than normal values. Daptomycin is a safe and effective antimicrobial agent for the treatment of severe infections caused by Gram-positive bacteria.
Rhyee, Sean H; Farrugia, Lynn; Campleman, Sharan L; Wax, Paul M; Brent, Jeffrey
The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. The Registry was queried for all cases entered between January 1 and December 31, 2014. Specific data reviewed for analysis included demographics (age, gender, ethnicity), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms, clinical findings, fatalities, and treatment. In 2014, 9172 cases were entered in the Registry across 47 active member sites. Females accounted for 51.1 % of cases. The majority (65.1 %) of cases were adults between the ages of 19 and 65. Caucasians made up the largest identified ethnic group (48.9 %). Most Registry cases originated from the inpatient setting (93.5 %), with a large majority of these consultations coming from the emergency department or inpatient admission services. Intentional and unintentional pharmaceutical exposures continued to be the most frequent reasons for consultation, accounting for 61.7 % of cases. Among cases of intentional pharmaceutical exposure, 62.4 % were associated with a self-harm attempt. Non-pharmaceutical exposures accounted for 14.1 % of Registry cases. Similar to the past years, non-opioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Clinical signs or symptoms were noted in 81.9 % of cases. There were 89 recorded fatalities (0.97 %). Medical treatment (e.g., antidotes, antivenom, chelators, supportive care) was rendered in 62.3 % of cases. Patient demographics and exposure characteristics in 2014 Registry cases remain similar to prior years. The majority of consultations arose in the acute care setting (emergency department or inpatient) and involved exposures to pharmaceutical products. Among exposures, non-opioid analgesics, sedative/hypnotics, and opioids were the most frequently
Ingles, Jodie; McGaughran, Julie; Vohra, Jitendra; Weintraub, Robert G; Davis, Andrew; Atherton, John; Semsarian, Christopher
A National Genetic Heart Disease Registry has recently been established, with the aim to enroll every family in Australia with a genetically determined cardiomyopathy or primary arrhythmic disorder. The Registry seeks to further our understanding of the impact and burden of disease in this population; increase awareness and provide education to health professionals and families; and establish a large cardiac genetic cohort as a resource for approved research studies. The Registry is currently recruiting families with inherited cardiomyopathies (e.g. hypertrophic cardiomyopathy) and primary arrhythmogenic disorders (e.g. long QT syndrome), with scope to expand this in the future. Affected individuals, as well as their first-degree (at-risk) family members are eligible to enroll. Participants are currently being recruited from cardiac genetics clinics in approved recruitment sites and hope to expand to other Australian centres including general cardiology practice in the future. A significant focus of the Registry is to improve understanding and create awareness of inherited heart diseases, which includes ensuring families are aware of genetic testing options and current clinical screening recommendations for at-risk family members. A Registry Advisory Committee has been established under the NHMRC Guidelines, and includes a representative from each major recruitment centre. This committee approves all decisions relating to the Registry including approval of research studies. A National Genetic Heart Disease Registry will provide a valuable resource to further our knowledge of the clinical and genetic aspects of these diseases. Since most of the current data about the prevalence, natural history and outcomes of genetic heart diseases has emanated from the United States and Europe, characterising these Australian populations will be of significant benefit, allowing for more informed and specific health care planning and resource provision.
Cronin-Fenton, Deirdre P; Heide-Jørgensen, Uffe; Ahern, Thomas P
BACKGROUND: Opioids may alter immune function, thereby potentially affecting cancer recurrence. The authors investigated the association between postdiagnosis opioid use and breast cancer recurrence. METHODS: Patients with incident, early stage breast cancer who were diagnosed during 1996 through...... 2008 in Denmark were identified from the Danish Breast Cancer Cooperative Group Registry. Opioid prescriptions were ascertained from the Danish National Prescription Registry. Follow-up began on the date of primary surgery for breast cancer and continued until breast cancer recurrence, death......, emigration, 10 years, or July 31, 2013, whichever occurred first. Cox regression models were used to compute hazard ratios and 95% confidence intervals associating breast cancer recurrence with opioid prescription use overall and by opioid type and strength, immunosuppressive effect, chronic use (≥6 months...
K.G.L. Hermans (Karin)
textabstractIn developed countries, prostate cancer is the most common malignancy in men and a major cause of cancer-related death (1). In The Netherlands 93 new cases per 100,000 men were detected in 2003 (The Netherlands Cancer Registry). Prostate cancer incidence varies between different ethnic g
Sugiyama, Hitoshi; Yokoyama, Hitoshi; Sato, Hiroshi; Saito, Takao; Kohda, Yukimasa; Nishi, Shinichi; Tsuruya, Kazuhiko; Kiyomoto, Hideyasu; Iida, Hiroyuki; Sasaki, Tamaki; Higuchi, Makoto; Hattori, Motoshi; Oka, Kazumasa; Kagami, Shoji; Kawamura, Tetsuya; Takeda, Tetsuro; Hataya, Hiroshi; Fukasawa, Yuichiro; Fukatsu, Atsushi; Morozumi, Kunio; Yoshikawa, Norishige; Shimizu, Akira; Kitamura, Hiroshi; Yuzawa, Yukio; Matsuo, Seiichi; Kiyohara, Yutaka; Joh, Kensuke; Nagata, Michio; Taguchi, Takashi; Makino, Hirofumi
The Japan Renal Biopsy Registry (J-RBR) was started in 2007 and the Japan Kidney Disease Registry (J-KDR) was then started in 2009 by the Committee for Standardization of Renal Pathological Diagnosis and the Committee for the Kidney Disease Registry of the Japanese Society of Nephrology. The purpose of this report is to describe and summarize the registered data from 2009 and 2010. For the J-KDR, data were collected from 4,016 cases, including 3,336 (83.1 %) by the J-RBR and 680 (16.9 %) other cases from 59 centers in 2009, and from 4,681 cases including 4,106 J-RBR cases (87.7 %) and 575 other cases (12.3 %) from 94 centers in 2010, including the affiliate hospitals. In the J-RBR, 3,165 native kidneys (94.9 %) and 171 renal grafts (5.1 %) and 3,869 native kidneys (94.2 %) and 237 renal grafts (5.8 %) were registered in 2009 and 2010, respectively. Patients younger than 20 years of age comprised 12.1 % of the registered cases, and those 65 years and over comprised 24.5 % of the cases with native kidneys in 2009 and 2010. The most common clinical diagnosis was chronic nephritic syndrome (55.4 % and 50.0 % in 2009 and 2010, respectively), followed by nephrotic syndrome (22.4 % and 27.0 %); the most frequent pathological diagnosis as classified by the pathogenesis was IgA nephropathy (31.6 % and 30.4 %), followed by primary glomerular diseases (except IgA nephropathy) (27.2 % and 28.1 %). Among the primary glomerular diseases (except IgA nephropathy) in the patients with nephrotic syndrome, membranous nephropathy was the most common histopathology in 2009 (40.3 %) and minor glomerular abnormalities (50.0 %) were the most common in 2010 in native kidneys in the J-RBR. Five new secondary and longitudinal research studies by the J-KDR were started in 2009 and one was started in 2010.
Eibye, Simone; Krüger Kjær, Susanne; Nielsen, Thor S S;
to a pregnancy. MATERIALS AND METHODS: From the nationwide Danish Cancer Registry, we identified women diagnosed with a primary cervical cancer at ages 15 to 44 years during 1968 to 2006 born after April 1, 1935. The women were linked to several Danish national registries to obtain information on births...
Haddock, R L; Paulino, Y C; Bordallo, R
Patient records from the Guam Cancer Registry were compared with patients listed in a health department viral hepatitis case registry and the numbers of liver cancer and viral hepatitis cases were compared by ethnicity. Hepatitis C was the form of viral hepatitis most common among liver cancer cases on Guam (63.3% of viral hepatitis-associated liver cancer cases). Since viral hepatitis is an important cause of liver cancer, studies such as the present one may provide the information necessary to establish programs (screening of populations at risk and infant vaccination in the case of hepatitis B, for example) that may lessen the impact of liver cancer in the future.
Weinstein, Adam; Beckrich, Amy; Singer, Dale
It is important for providers and practices to begin working with registry level data. Submitting data to a qualified clinical data registry currently satisfies Meaningful Use Stage II menu set items. In the future, with the rollout of MIPS and the increasing focus on sharing risk, registry data will be used as a benchmark for both publicly-reported performance (the physician compare program will be linked to provider-level QCDR data) and modifications to reimbursement. It is important to remember that PQRS data is the basis for the value based modifier now and MIPS- related quality data after 2018. The RPA has launched and is evolving a unique and versatile nephrology-specific data collection and analytics tool. In collaboration with the American Society of Diagnostic and Interventional Nephrology, vascular access measures will be added to the registry for 2016. The registry and the analytics platform is a tier of software operating above your practice management system and EHR and, if data can be obtained, it can span all the locations in which nephrologists provide care.
Full Text Available I would like to thank the Preservation Division for the invitation to participate in the programme today. I would also like to thank the LIBER Board for their interest in the early stages of this project culminating in the announcement LIBER President Erland Kolding Nielsen made last night about LIBER support and collaboration with OCLC PICA with respect to the Digital Registry. This initiative reflects my new role within OCLC PICA, which is to identify opportunities for joint development with our major shareholder OCLC, and sometimes 3rd parties such as LIBER. My main purpose today is to provide a descriptive paper to inform LIBER members about the OCLC Digital Registry and to outline the possible role for LIBER and its membership in a model for European participation. My presentation will be in three phases: the need for a registry, a description of the Registry and finally, and perhaps most importantly, to outline opportunities for LIBER and its members in establishing a model for European contribution. We are all familiar with the concept of a registry through our participation in union catalogues and perhaps also from our experience with microfilms through the European Register of Microform Masters (EROMM hosted by our friends in Göttingen.
Chen, Wanqing; Zheng, Rongshou; Baade, Peter D; Zhang, Siwei; Zeng, Hongmei; Bray, Freddie; Jemal, Ahmedin; Yu, Xue Qin; He, Jie
With increasing incidence and mortality, cancer is the leading cause of death in China and is a major public health problem. Because of China's massive population (1.37 billion), previous national incidence and mortality estimates have been limited to small samples of the population using data from the 1990s or based on a specific year. With high-quality data from an additional number of population-based registries now available through the National Central Cancer Registry of China, the authors analyzed data from 72 local, population-based cancer registries (2009-2011), representing 6.5% of the population, to estimate the number of new cases and cancer deaths for 2015. Data from 22 registries were used for trend analyses (2000-2011). The results indicated that an estimated 4292,000 new cancer cases and 2814,000 cancer deaths would occur in China in 2015, with lung cancer being the most common incident cancer and the leading cause of cancer death. Stomach, esophageal, and liver cancers were also commonly diagnosed and were identified as leading causes of cancer death. Residents of rural areas had significantly higher age-standardized (Segi population) incidence and mortality rates for all cancers combined than urban residents (213.6 per 100,000 vs 191.5 per 100,000 for incidence; 149.0 per 100,000 vs 109.5 per 100,000 for mortality, respectively). For all cancers combined, the incidence rates were stable during 2000 through 2011 for males (+0.2% per year; P = .1), whereas they increased significantly (+2.2% per year; P cancer cases and deaths can be prevented through reducing the prevalence of risk factors, while increasing the effectiveness of clinical care delivery, particularly for those living in rural areas and in disadvantaged populations.
Shalu Jain; Sunita Saxena; Anup Kumar
Data from national cancer registries shows that incidence of certain cancers are on rise in India. The cancers which are showing significant increase in incidence rates include prostate, mouth and kidney among male population, corpus uteri, breast and thyroid among female population and lung cancer in both male and female populations. In the present review article we have focused on epidemiology of prostate cancer in Indian subcontinent in terms of incidence, survival, and mortality etc. The ...
Rasmussen, Jeppe V; Brorson, Stig; Hallan, Geir
BACKGROUND: The Nordic Arthroplasty Register Association was initiated in 2007, and several papers about hip and knee arthroplasty have been published. Inspired by this, we aimed to examine the feasibility of merging data from the Nordic national shoulder arthroplasty registries by defining...... a common minimal data set. METHODS: A group of surgeons met in 2014 to discuss the feasibility of merging data from the national shoulder registries in Denmark, Norway, and Sweden. Differences in organization, definitions, variables, and outcome measures were discussed. A common minimal data set...... of arthroplasties for osteoarthritis have increased in the study period. The most common arthroplasty type was total shoulder arthroplasty (34%) for osteoarthritis and stemmed hemiarthroplasty (90%) for acute fractures. CONCLUSION: We were able to merge data from the Nordic national registries into 1 common data...
Rolfson, Ola; Bohm, Eric; Franklin, Patricia
unsatisfied, dissatisfied, neutral, satisfied, or very satisfied). Survey logistics include patient instructions, paper- and electronic-based data collection, reminders for follow-up, centralized as opposed to hospital-based follow-up, sample size, patient- or joint-specific evaluation, collection intervals......The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use...... are the Short Form health surveys (SF-36 or SF-12) and EuroQol 5-dimension (EQ-5D). The Working Group recommends that registries should choose specific PROMs that have been appropriately developed with good measurement properties for arthroplasty patients. The Working Group recommend the use of a 1-item pain...
Doran M. Christensen, DO, REAC/TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician
Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater share of deaths has occurred in medical settings.
Scott, Anna Mae
Objective Health technology assessment (HTA) is a process of assessing evidence to inform policy decisions about public subsidy of new drugs and medical procedures. Where evidence is uncertain but the technology itself is promising, funders may recommend funding on an interim basis. It is unknown whether evidence from clinical registries is used to resolve uncertainties identified in interim-funded decisions made by Australian HTA bodies. Therefore, the present study evaluated the role of evidence from clinical registries in resolving evidence uncertainties identified by the Medical Services Advisory Committee (MSAC).Methods All HTAs considered by MSAC between 1998 and 2015 were reviewed and assessments that recommended interim funding were identified. The MSAC website was searched to identify reassessments of these recommendations and sources of evidence used to resolve the uncertainties were identified.Results Of 173 HTA reports considered by MSAC, 17 (10%) contained an interim funding recommendation. Eight recommendations cited uncertainty around safety, 15 cited uncertainty around clinical effectiveness and 13 cited uncertainty around economics (cost-effectiveness and/or budget impact). Of the 17 interim funding recommendations, 11 (65%) have been reassessed. Only two reassessments relied on clinical registry evidence to resolve evidence gaps identified at the time of the interim funding recommendation.Conclusions Clinical registries are underused as a source of evidence for resolving uncertainties around promising new health technologies in Australia. An open dialogue between stakeholders on the role of registries in this context is needed.What is known about the topic? HTA is a process of assessing the evidence to inform policy decisions about public subsidy of new health technologies (e.g. pharmaceuticals, diagnostic tests, medical procedures). Where evidence is uncertain but the technology under evaluation is promising, funders may recommend the funding of
R.A. Damhuis (Ronald); C.J. Meurs (Claudia); W.S. Meijer (Willem)
textabstractBACKGROUND: To support decisions about surgical treatment of elderly patients with cancer, population-based estimates of postoperative mortality (POM) rates are required. METHODS: Electronic records from the Rotterdam Cancer Registry were retrieved for octogenarians and nonagenarians who
Wanqing Chen; Rongshou Zheng; Siwei Zhang; Ping Zhao; Guanglin Li; Lingyou Wu; Jie He
In 2012,the National Central Cancer Registry (NCCR) of China collected cancer registration information for the year 2009 from local cancer registries and analyzed it to describe the incidences and mortalities of cancers in China.Based on the data quality criteria from NCCR,data from 104 registries covering 85,470,522 people (57,489,009 in urban areas and 27,981,513 in rural areas) were checked and evaluated.The data from 72 registries were qualified and accepted for the cancer registry annual report in 2012.The total cancer incident cases and cancer deaths were 244,366 and 154,310,respectively.The morphologically verified cases accounted for 67.23％ and 3.14％ of the incident cases only had information from death certifications.The crude incidence in the Chinese cancer registration areas was 285.91/100,000 (317.97/100,000 in males and 253.09/100,000 in females).The age-standardized rates for incidences based on the Chinese standard population (ASRIC) and the world standard population (ASRIW) were 146.87/100,000 and 191.72/100,000,respectively,with a cumulative incidence of 22.08％.The cancer mortality in the Chinese cancer registration areas was 180.54/100,000 (224.20/100,000 in males and 135.85/100,000 in females).The age-standardized rates for mortalities based on the Chinese standard population (ASRMC) and the world standard population (ASRMW) were 85.06/100,000 and 115.65/100,000,respectively,and the cumulative mortality was 12.94％.Lung cancer,gastric cancer,colorectal cancer,liver cancer,esophageal cancer,pancreatic cancer,encephaloma,lymphoma,female breast cancer,and cervical cancer were the most common cancers,accounting for 75％ of all cancer cases.Lung cancer,gastric cancer,liver cancer,esophageal cancer,colorectal cancer,pancreatic cancer,breast cancer,encephaloma,leukemia,and lymphoma accounted for 80％ of all cancer deaths.The cancer registration's population coverage has been increasing,and its data quality is improving.As the basis of the
D'Agnolo, Hedwig Ma; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner; Drenth, Joost Ph
The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well.
Full Text Available Reimar W Thomsen, Henrik Toft Sørensen Department of Clinical Epidemiology, Aarhus University Hospital, DenmarkValidation studies of health care registries are considered boring by some. An epidemiologist recently conducted a validation study based on the Danish National Registry of Patients and received the following unflattering comment from a reviewer: “A good example of a paper of limited scope that probably would only be published electronically where space is unlimited”. We do not subscribe to this point of view. See Original Research article
D’Agnolo, Hedwig MA; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner
The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well. PMID:27403298
Demleitner, Markus; Molinaro, Marco; Greene, Gretchen; Dower, Theresa; Perdikeas, Menelaos
Registries provide a mechanism with which VO applications can discover and select resources - first and foremost data and services - that are relevant for a particular scientific problem. This specification defines an interface for searching this resource metadata based on the IVOA's TAP protocol. It specifies a set of tables that comprise a useful subset of the information contained in the registry records, as well as the table's data content in terms of the XML VOResource data model. The general design of the system is geared towards allowing easy authoring of queries.
Full Text Available Dementia is one of the most disabling health conditions for older people. Increasing attention is paid to the preclinical phase such as cognitive frailty and mild cognitive impairment, and to the prevention programs designed to reduce the number of patients in the future. The aims of this brief report are therefore: i to illustrate an action plan currently active in Treviso and that is aimed at secondary prevention in cognitive frailty subjects on the Treviso Dementia (TREDEM Registry; ii to highlight the results achieved by the TREDEM Registry up to now and how these can be used in future research.
Cancer begins in your cells, which are the building blocks of your body. Normally, your body forms ... be benign or malignant. Benign tumors aren't cancer while malignant ones are. Cells from malignant tumors ...
Baili, Paolo; Hoekstra-Weebers, Josette; Van Hoof, Elke;
on follow-up and treatments for samples of cases archived in cancer registries. (b) Indicators of rehabilitation success. These include: return to work, quality of life, and satisfaction of specific rehabilitation needs. Studies can be performed to estimate these indicators in individual countries......Little is known of cancer rehabilitation needs in Europe. EUROCHIP-3 organised a group of experts to propose a list of population-based indicators used for describing cancer rehabilitation across Europe. The aim of this study is to present and discuss these indicators. A EUROCHIP-3 expert panel...... reached agreement on two types of indicators. (a) Cancer prevalence indicators. These were proposed as a means of characterising the burden of cancer rehabilitation needs by time from diagnosis and patient health status. These indicators can be estimated from cancer registry data or by collecting data...
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF VETERANS AFFAIRS Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment.... 2900--NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire,'' in...
... Inspection Service Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION... Service stakeholder registry. FOR FURTHER INFORMATION CONTACT: Ms. Hallie Zimmers, Advisor for State and Stakeholder Relations, Legislative and Public Affairs, APHIS, room 1147, 1400 Independence Avenue...
... Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and Hazardous Materials Safety... registry of pipeline and liquefied natural gas operators. FOR FURTHER INFORMATION CONTACT: Jamerson Pender... 72878), titled: ``Pipeline Safety: Updates to Pipeline and Liquefied Natural Gas Reporting...
U.S. Department of Health & Human Services — The National Registry of Evidence-based Programs and Practices (NREPP) is a searchable online registry of mental health and substance abuse interventions that have...
Wanqing Chen; Rongshou Zheng; Hongmei Zeng; Siwei Zhang
Background: The National Central Cancer Registry (NCCR) collected population-based cancer registration data in 2012 from local registries and estimated the cancer incidence and mortality in China. Methods: In the middle of 2015, 261 cancer registries submitted reports on new cancer cases and deaths occurred in 2012. Qualiifed data from 193 registries were used for analysis after evaluation. Crude rates, number of cases, and age-standardized rates stratiifed by area (urban/rural), sex, age group, and cancer type were calculated according to the national population in 2012. Results: The covered population were 198,060,406 from 193 qualiifed cancer registries (74 urban and 119 rural reg-istries). The major indicators of quality control, percentage of cases morphologically veriifed (MV%), death certiifcate-only cases (DCO%), and the mortality to incidence (M/I) ratio, were 69.13%, 2.38%, and 0.62, respectively. It was esti-mated that there were 3,586,200 new cancer cases and 2,186,600 cancer deaths in 2012 in China with an incidence of 264.85/100,000 [age-standardized rate of incidence by the Chinese standard population (ASRIC) of 191.89/100,000] and a mortality of 161.49/100,000 [age-standardized rate of mortality by the Chinese standard population (ASRMC) of 112.34/100,000]. The ten most common cancer sites were the lung, stomach, liver, colorectum, esophagus, female breast, thyroid, cervix, brain, and pancreas, accounting for approximately 77.4%of all new cancer cases. The ten lead-ing causes of cancer death were lung cancer, liver cancer, gastric cancer, esophageal cancer, colorectal cancer, pancre-atic cancer, female breast cancer, brain tumor, leukemia, and lymphoma, accounting for 84.5%of all cancer deaths. Conclusions: Continuous cancer registry data provides basic information in cancer control programs. The cancer burden in China is gradually increasing, both in urban and rural areas, in males and females. Effcient cancer preven-tion and control, such as
Jensen, M S; Snerum, T M Ø; Olsen, L H;
In recent years several Danish studies of the etiology, time trends and long-term health consequences of cryptorchidism have relied on diagnoses and surgical treatments registered in the National Patient Registry. We evaluated the diagnostic accuracy of these registry data.......In recent years several Danish studies of the etiology, time trends and long-term health consequences of cryptorchidism have relied on diagnoses and surgical treatments registered in the National Patient Registry. We evaluated the diagnostic accuracy of these registry data....
Lim, Y N; Lim, T O; Lee, D G; Wong, H S; Ong, L M; Shaariah, W; Rozina, G; Morad, Z
The Malaysian National Renal Registry was set up in 1992 to collect data for patients on renal replacement therapy (RRT). We present here the report of the Malaysian dialysis registry. The objectives of this papar are: (1) To examine the overall provision of dialysis treatment in Malaysia and its trend from 1980 to 2006. (2) To assess the treatment rate according to the states in the country. (3) To describe the method, location and funding of dialysis. (4) To characterise the patients accepted for dialysis treatment. (5) To analyze the outcomes of the dialysis treatment. Data on patients receiving dialysis treatment were collected at initiation of dialysis, at the time of any significant outcome, as well as yearly. The number of dialysis patients increased from 59 in 1980 to almost 15,000 in 2006. The dialysis acceptance rate increased from 3 per million population in 1980 to 116 per million population in 2006, and the prevalence rate from 4 to 550 per million population over the same period. The economically advantaged states of Malaysia had much higher dialysis treatment rates compared to the less economically advanced states. Eighty to 90% of new dialysis patients were accepted into centre haemodialysis (HD), and the rest into the chronic ambulatory peritoneal dialysis (CAPD) programme. The government provided about half of the funding for dialysis treatment. Patients older than 55 years accounted for the largest proportion of new patients on dialysis since the 1990s. Diabetes mellitus has been the main cause of ESRD and accounted for more than 50% of new ESRD since 2002. Annual death rate averaged about 10% on HD and 15% on CAPD. The unadjusted 5-year patient survival on both HD and CAPD was about 80%. Fifty percent of dialysis patients reported very good median QoL index score. About 70% of dialysis patients were about to work full or part time. There has been a very rapid growth of dialysis provision in Malaysia particularly in the older age groups. ESRD
The dearth of reliable survival statistics from developing countries was very evident until the mid-1990s. This prompted the International Agency for Research on Cancer (IARC) to undertake a project that facilitated hands-on-training and thereby transfer of knowledge and technology on cancer survival analysis to a majority of researchers from the participating population-based cancer registries, which culminated in the publication of the first volume of the IARC scientific publication on Cancer Survival in Developing Countries in 1998. The present study is the second in the series with wider geographical coverage and is based on data from 27 registries in 14 countries in Africa, Asia, the Caribbean and Central America. The calendar period of registration of incident cases for the present study ranges between 1990 and 2001. Data on 564 606 cases of 1-56 cancer sites from different registries are reported. Data from eleven registries were utilized for eliciting survival trend and seventeen registries for reporting survival by clinical extent of disease. Besides chapters on every registry and general chapters on methodology, database and overview, the availability of online comparative statistics on cancer survival data by participating registries or cancer site in the form of tables or graphs is an added feature (available online at http://survcan.iarc.fr).
Page, William F
The National Academy of Sciences-National Research Council (NAS-NRC) Twin Registry is one of the oldest, national population-based twin registries in the United States. It consists of 15,924 white male twin pairs born in the years 1917 to 1927 (inclusive), both of whom served in the armed forces, mostly during World War II. This article updates activity in this registry since the earlier 2002 article in Twin Research. The results of clinically based studies on dementia, Parkinson's disease, age-related macular degeneration, and primary osteoarthritis were published, as well as articles based on previously collected questionnaire data on chronic fatigue syndrome, functional limitations, and healthy aging. In addition, risk factor studies are being planned to merge clinical data with earlier collected risk factor data from questionnaires. Examination data from the subset of National Heart, Lung, and Blood Institute (NHLBI) twins resulted in a number of articles, including the relationship of endogenous sex hormones to coronary heart disease and morphological changes in aging brain structures. The NEO Five-Factor Personality Inventory (a paper-and-pencil self-administered questionnaire) has been fielded for the first time. A push to consolidate the various data holdings of the registry is being made.
Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas
The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179
Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas
The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application.
Full Text Available Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%, motor vehicle collisions (23.3%, and blunt assault (10.5%. Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P < 0.001 and oxygen saturation (26 to 92%, P < 0.001 documentation was observed. Conclusion: A trauma registry is possible to implement in a resource-poor setting. Future efforts will focus on analysis of data to enhance prevention and treatment of injuries in Iquitos.
de By, Theo M M H; Mohacsi, Paul; Gummert, Jan
other founding international members. It aims to promote scientific research to improve care of end-stage heart failure patients with ventricular assist device or a total artificial heart as long-term mechanical circulatory support. Likewise, the organization aims to provide and maintain a registry...
Full Text Available Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL. Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL. BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.
... without Chemical Abstracts Service Registry Numbers. 799.5025 Section 799.5025 Protection of Environment... orders for mixtures without Chemical Abstracts Service Registry Numbers. This section sets forth a list of mixtures (with no Chemical Abstracts Service Registry Numbers) which are the subject of...
... AFFAIRS Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment....firstname.lastname@example.org . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire.'' SUPPLEMENTARY INFORMATION: Title: Open Burn Pit Registry Airborne Hazard...
... Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire) Activity: Comment Request... forms of information technology. Title: Open Burn Pit Registry Airborne Hazard Self-Assessment...@va.gov . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard...
... Submission for OMB Review; Comment Request Information Program on the Genetic Testing Registry AGENCY... Genetic Testing Registry; Type of Information Collection Request: New collection; Need and Use of... tests. The Genetic Testing Registry (GTR) will provide a centralized, online location for...
Hollak, C.E.M.; Aerts, J.M.F.G.; Aymé, S.; Manuel, J.
Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and n
Morrow, Robert W.; Fletcher, Jason; Kelly, Kim F.; Shea, Laura A.; Spence, Maureen M.; Sullivan, Janet N.; Cerniglia, Joan R.; Yang, YoonJung
Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…
...: Implementation of the National Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and... registry of pipeline and liquefied natural gas operators. This notice provides updates to the information... and liquefied natural gas (LNG) operators. New operators use the national registry to obtain...
Wiegand, Timothy; Wax, Paul; Smith, Eric; Hart, Katherine; Brent, Jeffrey
In 2010, the American College of Medical Toxicology (ACMT) established its Case Registry, the Toxicology Investigators Consortium (ToxIC). All cases are entered prospectively and include only suspected and confirmed toxic exposures cared for at the bedside by board-certified or board-eligible medical toxicologists at its participating sites. The primary aims of establishing this Registry include the development of a realtime toxico-surveillance system in order to identify and describe current or evolving trends in poisoning and to develop a research tool in toxicology. ToxIC allows for extraction of data from medical records from multiple sites across a national and international network. All cases seen by medical toxicologists at participating institutions were entered into the database. Information characterizing patients entered in 2012 was tabulated and data from the previous years including 2010 and 2011 were included so that cumulative numbers and trends could be described as well. The current report includes data through December 31st, 2012. During 2012, 38 sites with 68 specific institutions contributed a total of 7,269 cases to the Registry. The total number of cases entered into the Registry at the end of 2012 was 17,681. Emergency departments remained the most common source of consultation in 2012, accounting for 61 % of cases. The most common reason for consultation was for pharmaceutical overdose, which occurred in 52 % of patients including intentional (41 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,422 entries in 13 % of cases) non-opioid analgesics (1,295 entries in 12 % of cases), opioids (1,086 entries in 10 % of cases) and antidepressants (1,039 entries in 10 % of cases). N-acetylcysteine (NAC) was the most common antidote administered in 2012, as it was in previous years, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab
Howard, L.; Heaphey, L.; Fleming, C.R.; Lininger, L.; Steiger, E. (Division of Clinical Nutrition, Albany Medical Center, New York (United States))
The OASIS Registry started annual collection of longitudinal data on patients on home parenteral nutrition (HPN) in 1984. This report describes outcome profiles on 1594 HPN patients in seven disease categories. Analysis showed clinical outcome was principally a reflection of the underlying diagnosis. Patients with Crohn's disease, ischemic bowel disease, motility disorders, radiation enteritis, and congenital bowel dysfunction all had a fairly long-term clinical outcome, whereas those with active cancer and acquired immunodeficiency syndrome (AIDS) had a short-term outcome. The long-term group had a 3-year survival rate of 65 to 80%, they averaged 2.6 complications requiring hospitalization per year, and 49% experienced complete rehabilitation. The short-term group had a mean survival of 6 months; they averaged 4.6 complications per year and about 15% experienced complete rehabilitation. The registry data also indicated HPN was used for 19,700 patients in 1987 with therapy growth averaging about 8% per year. This growth was chiefly from new cancer patients. The number of new patients with long-term disorders in whom HPN was initiated appeared rather constant. The authors conclude that these clinical outcome assessments justify HPN for long-term patients, but the utility and appropriateness of HPN for the cancer and AIDS patients remains uncertain and requires further study. Medical, social, and fiscal aspects of HPN management in long-term and short-term patients appear to involve quite separate considerations.
Full Text Available Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients′ characteristics as well as risk factors which eventually leads to making better decisions.
Cal-Purriños, Natalia; Arribas-Leal, Jose M; Carnero-Alcazar, Manuel; Gutierrez-Diez, Jose F; Cuenca-Castillo, Jose J
Introduction Rapid deployment valves (RDV) represent a newly introduced approach to aortic valve replacement which facilitates surgical implantation and minimally invasive techniques, shortens surgical times and shows excellent haemodynamic performance. However, evidence on their safety, efficacy and potential complications is mostly fitted with small-volume and retrospective studies. Moreover, no current guidelines exist. To improve our knowledge on this technology, The Rapid Deployment Aortic Replacement (RADAR) Registry will be established across Spain with the aim of assessing RDV outcomes in the real-world setting. Methods and analysis The RADAR Registry is designed as a product registry that would provide information on its use and outcomes in clinical practice. This multicentre, prospective, national effort will initially involve 4 centres in Spain. Any patient undergoing cardiac surgery for aortic valve replacement and receiving an RDV as an isolated operation or in combination with other cardiac procedures may be included. Participation is voluntary. Data collection is equal to information obtained during standard care and is prospectively entered by the participating physicians perioperatively and during subsequent follow-up visits. The primary outcome assessed is in-hospital and up to 5 years of follow-up, prosthetic valve functioning and clinical status. Secondary outcomes are to perform subgroup analysis, to compare outcomes with other existing approaches and to develop future clinical guidelines. The follow-up assessments are timed with routine clinical appointments. Dissociated data will be extracted and collectively analysed. Initial target sample size for the registry is 500 participants entered with complete follow-up information. Different substudies will be implemented within the registry to investigate specific populations undergoing aortic valve replacement. Ethics and dissemination The protocol is approved by all local institutional ethics
Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E
Stereotactic radiosurgery (SRS) represents a multidisciplinary approach to the delivery of ionizing high-dose radiation to treat a wide variety of disorders. Much of the radiosurgical literature is based upon retrospective single-center studies along with a few randomized controlled clinical trials. More timely and effective evidence is needed to enhance the consistency and quality of and clinical outcomes achieved with SRS. The authors summarize the creation and implementation of a national SRS registry. The American Association of Neurological Surgeons (AANS) through NeuroPoint Alliance, Inc., started a successful registry effort with its lumbar spine initiative. Following a similar approach, the AANS and NeuroPoint Alliance collaborated with corporate partners and the American Society for Radiation Oncology to devise a data dictionary for an SRS registry. Through administrative and financial support from professional societies and corporate partners, a framework for implementation of the registry was created. Initial plans were devised for a 3-year effort encompassing 30 high-volume SRS centers across the country. Device-specific web-based data-extraction platforms were built by the corporate partners. Data uploaders were then used to port the data to a common repository managed by Quintiles, a national and international health care trials company. Audits of the data for completeness and veracity will be undertaken by Quintiles to ensure data fidelity. Data governance and analysis are overseen by an SRS board comprising equal numbers of representatives from the AANS and NeuroPoint Alliance. Over time, quality outcome assessments and post hoc research can be performed to advance the field of SRS. Stereotactic radiosurgery offers a high-technology approach to treating complex intracranial disorders. Improvements in the consistency and quality of care delivered to patients who undergo SRS should be afforded by the national registry effort that is underway.
Full Text Available Objective: To describe the results of the home enteral nutrition (HEN registry of the NADYA-SENPE group in 2011 and 2012. Material and methods: We retrieved the data of the patients recorded from January 1st 2011 to December 31st 2012. Results: There were 3021 patients in the registry during the period from 29 hospitals, which gives 65.39 per million inhabitants. 97.95% were adults, 51.4% male. Mean age was 67.64 ± 19.1, median age was 72 years for adults and 7 months for children. Median duration with HEN was 351 days and for 97.5% was their first event with HEN. Most patients had HEN because of neurological disease (57.8%. Access route was nasogastric tube for 43.5% and gastrostomy for 33.5%. Most patients had limited activity level and, concerning autonomy, 54.8% needed total help. Nutritional formula was supplied from chemist's office to 73.8% of patients and disposables, when necessary, was supplied from hospitals to 53.8% of patients. HEN was finished for 1,031 patients (34.1% during the period of study, 56.6% due to decease and 22.2% due to recovery of oral intake. Conclusions: Data from NADYA-SENPE registry must be explained cautiously because it is a non-compulsory registry. In spite of the change in the methodology of the registry in 2010, tendencies regarding HEN have been maintained, other than oral route.
Gatz, Margaret; Harris, Jennifer R; Kaprio, Jaakko; McGue, Matt; Smith, Nicholas L; Snieder, Harold; Spiro, Avron; Butler, David A
The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved clinical care. The cohort was assembled in the early 1960s with identification of approximately 16,000 twin pairs, review of service records, a brief mailed questionnaire assessing zygosity, and a health survey largely comparable to questionnaires used at that time with Scandinavian twin registries. Subsequent large-scale data collection occurred in 1974, 1985 and 1998, repeating the health survey and including information on education, employment history and earnings. Self-reported data have been supplemented with mortality, disability and medical data through record linkage. Potential collaborators should access the study website [http://www.iom.edu/Activities/Veterans/TwinsStudy.aspx] or e-mail the Medical Follow-up Agency at [Twins@nas.edu]. Questionnaire data are being prepared for future archiving with the National Archive of Computerized Data on Aging (NACDA) at the Inter-University Consortium for Political and Social Research (ICPSR), University of Michigan, MI.
Jakobsen, Erik Winther; Green, Anders; Oesterlind, Kell
To improve prognosis and quality of lung cancer care the Danish Lung Cancer Group has developed a strategy consisting of national clinical guidelines and a clinical quality and research database. The first edition of our guidelines was published in 1998 and our national lung cancer registry...... was opened for registrations in 2000. This article describes methods and results obtained by multidisciplinary collaboration and illustrates how quality of lung cancer care can be improved by establishing and monitoring result and process indicators....
The cause of death entered on the death certificates of 193 patients originally diagnosed as having cancer of the breast was compared with information obtained from clinical records, cancer registry records, and necropsy findings to determine the accuracy of death certification and the proportion of patients who, though dying from another cause, still had overt signs of cancer of the breast. It was found that the overall error in certifying cause of death as breast cancer was small, being an ...
Cervical, endometrial, and ovarian cancers, have both high morbidity and mortality among the gynecologic malignant tumors in Japan. The present study was conducted using both the population-based cancer registry and the gynecologic cancer registry to elucidate the characteristics of gynecologic malignant tumors in Japan. Based on nationwide estimates from the population-based cancer registry in Japan, the morbidities and mortality of cervical, endometrial, and ovarian cancers were obtained and used for analysis. Clinicopathologic factors for cervical cancer, endometrial cancer, ovarian cancer, including age, clinical stage, postsurgical stage, histological type, therapeutic strategy, and prognosis were retrieved from the gynecologic cancer registry published by the Japan Society of Obstetrics and Gynecology and used for analysis. The morbidities of cervical, endometrial, and ovarian cancers were 10,908, 13,606, and 9,384 women in 2012, respectively. The prevalence of endometrial cancer has significantly and consistently been increasing and represents the most common gynecologic malignant tumor in Japan. The mortalities of cervical, endometrial, and ovarian cancers were 2.1, 1.3, and 3.2 per 100,000 in 2012, respectively. In 2014, 52.2% of cervical cancer patients were classified as stage I, 22.5% as stage II, 10.2% as stage III, and 11.2% as stage IV. In addition, 71.9% of endometrial cancer patients were classified as stage I, 6.0% as stage II, 13.3% as stage III, and 7.5% as stage IV. Finally, 43.2% of ovarian cancer patients were classified as stage I, 9.1% as stage II, 27.6% as stage III, and 7.2% as stage IV. Twelve point five percent of ovarian cancer patients received neoadjuvant chemotherapy. PMID:28198168
Wan-qing Chen; Hong-mei Zeng; Rong-shou Zheng; Si-wei Zhang; Jie He
Objective:Cancer incidence and mortality data collected from population-based cancer registries were analyzed to present the overall cancer statistics in Chinese registration areas by age,sex and geographic area in 2007.Methods:In 2010,48 cancer registries reported cancer incidence and mortality data of 2007 to National Central Cancer Registry of China.Of them,38 registries' data met the national criteria.Incidence and mortality were calculated by cancer sites,age,gender,and area.Age-standardized rates were described by China and World population.Results:The crude incidence rate for all cancers was 276.16/100,000 (305.22/100,000 for male and 246.46/100,000 for female; 284.71/100,000 in urban and 251.07/100,000 in rural).Age-standardized incidence rates by China and World population were 145.39/100,000 and 189.46/100,000 respectively.The crude mortality rate for all cancers was 177.09/100,000 (219.15/100,000 for male and 134.10/100,000 for female; 173.55/100,000 in urban and 187.49/100,000 in rural).Age-standardized mortality rates by China and World population were 86.06/100,000 and 116.46/100,000,respectively.The top 10 most frequently common cancer sites were the lung,stomach,colon and rectum,liver,breast,esophagus,pancreas,bladder,brain and lymphoma,accounting for 76.12％ of the total cancer cases.The top 10 causes of cancer death were cancers of the lung,liver,stomach,esophagus,colon and rectum,pancreas,breast,leukemia,brain and lymphoma,accounting for 84.37％ of the total cancer deaths.Conclusion:Cancer remains a major disease threatening people's health in China.Prevention and control should be enhanced,especially for the main cancers.
Full Text Available Annette Ingeman1, Grethe Andersen2, Heidi H Hundborg1, Søren P Johnsen11Department of Clinical Epidemiology, 2Department of Neurology, Aarhus University Hospital, DenmarkBackground: Stroke patients frequently experience medical complications; yet, data on incidence, causes, and consequences are sparse.Objective: To examine the data validity of medical complications among patients with stroke in a population-based clinical registry and a hospital discharge registry.Methods: We examined the predictive values, sensitivity and specificity of medical complications among patients admitted to specialized stroke units and registered in the Danish National Indicator Project (DNIP and the Danish National Registry of Patients (NRP between January 2003 and December 2006 (n = 8,024. We retrieved and reviewed medical records from a random sample of patients (n = 589, 7.3%.Results: We found substantial variation in the data quality of stroke-related medical complication diagnoses both within the specific complications and between the registries. The positive predictive values ranged from 39.0%–87.1% in the DNIP, and from 0.0%–92.9% in the NRP. The negative predictive values ranged from 71.6%–98.9% in the DNIP and from 63.3% to 97.4% in the NRP. In both registries the specificity of the diagnoses was high. The sensitivity ranged from 23.5% (95% confidence interval [CI]: 14.9–35.4 for falls to 62.9% (95% CI: 54.9–70.4 for urinary infection in the DNIP, and from 0.0 (95% CI: 0.0–4.99 for falls to 18.1% (95% CI: 2.3–51.8 for pressure ulcer in the NRP.Conclusion: The DNIP may be useful for studying medical complications among patients with stroke.Keywords: stroke, medical complications, data validity, clinical database
Ellen Marquez Registry clerk 1997-2002 Evangeline Lucero Clerk 1997-2002 J. Isla Registry clerk 1999-2005 Portia de Guzman “ 2005 Elisha de... Maria Sayson “ “ Julita Reyes “ “ A.V. Laudico Consultant, Philippines Cancer Society 1999-2004 Francisca P. Cuevas HC Coordinator 2005 Maria
Sarode, Garqi S; Sarode, Sachin C; Patil, Shankargouda
Epidemiological data on cancer plays a substantial role in understanding the magnitude of seriousness and developing a preventive strategic planning at national and international level. In this regard, governments of various countries, under the guidance of World Health Organization (WHO), have commenced diverse national level campaigns like "National Cancer Registry Programme (NCRP)" where data are being congregated in a standardized mode.
M. Bontenbal (Marijke)
textabstractBreast cancer is the most conmlon malignant tumor among women, with an estimated 135,000 new cases and 58,000 recorded deaths per year in the Europeau Community in 1990. With respect to the Netherlands, the most recent data of The Netherlands Cancer Registry show an incidence of nearly 1
Yoshida, Kazuki; Radner, Helga; Kavanaugh, Arthur; Sung, Yoon-Kyoung; Bae, Sang-Cheol; Kishimoto, Mitsumasa; Matsui, Kazuo; Okada, Masato; Tohma, Shigeto; Weinblatt, Michael E.; Solomon, Daniel H.
Many biologic disease-modifying antirheumatic drug (DMARD) discontinuation studies have been conducted, but mainly in trial settings which result in limited generalizability. Registry studies can complement the current literature of biologic DMARD discontinuation by providing more generalizable information. However, registries may need to be combined to increase power and provide a more diverse patient population. This increased power could provide us information about risk and benefits of discontinuing biologic DMARD in typical clinical practice. However, use of multiple registries is not without challenges. In this review, we discuss the challenges to combining data across multiple registries, focusing on biologic discontinuation as an example. Challenges include: 1) generalizability of each registry; 2) new versus prevalent users designs; 3) outcome definitions; 4) different health care systems; 5) different follow up intervals; and 6) data harmonization. The first three apply to each registry, and the last three apply to combining multiple registries. This review describes these challenges, corresponding solutions, and potential future opportunities. PMID:24129133
Simonati, C; Limina, R M; Gelatti, U; Indelicato, A; Scarcella, C; Donato, F; Nardi, G
Cancer Registries are an essential part of any rational programme of cancer control, for assessing the impact of cancer in the community, for health care planning and monitoring screening programmes, according to local enviromental problems. The Brescia Cancer Registry started in 1994 producing prevalence, incidence and mortality data using only manual procedures of colletting and processing data from clinical and pathological sources in Brescia in 1993--1995. Data quality indicators such as the percentages of istologically or cytologically verified cases and that of cases registered on the basis of Death Certificate Only (DCO) are similar to those from the other Northern Italian Registries. Incidence rates for all causes and for various common sites are higher in Brescia than in other areas covered by Cancer Registries in North of Italy.
Larsen, Signe Benzon; Brasso, Klaus; Iversen, Peter;
in the Danish Cancer Registry through 31st December 2007 1:1 age-matched with cancer-free controls. Aggressive cancer was defined as ⩾T3 or Gleason score ⩾7 or N1 or M1. Statistical analyses were based on conditional logistic regression with age as underlying time axis. RESULTS: Total PSA and free-to-total PSA...
Logan, Judith R; Lieberman, David A
Administrative databases, registries, and clinical databases are designed for different purposes and therefore have different advantages and disadvantages in providing data for enhancing quality. Administrative databases provide the advantages of size, availability, and generalizability, but are subject to constraints inherent in the coding systems used and from data collection methods optimized for billing. Registries are designed for research and quality reporting but require significant investment from participants for secondary data collection and quality control. Electronic health records contain all of the data needed for quality research and measurement, but that data is too often locked in narrative text and unavailable for analysis. National mandates for electronic health record implementation and functionality will likely change this landscape in the near future.
Sverrild, Asger; Backer, Vibeke; Kyvik, Kirsten Ohm
of sarcoidosis in order to assess the overall contribution of genetic factors to the disease susceptibility. METHODS: Monozygotic and dizygotic twins enrolled in either the Danish or the Finnish population-based, national Twin Cohorts (61,662 pairs in total) were linked to diagnostic information on sarcoidosis...... obtained from the Danish National Patient Registry or the Social Insurance Institution, Finland, registry of re-imbursed medication using the 8th and 10th editions of the International Classification of Diseases. Fisher's exact test was used to compare probandwise concordance rates in different zygosity.......45-0.80). CONCLUSIONS: This study suggests that genetic factors play an important role in the susceptibility to sarcoidosis. This result should encourage the search for molecular genetic markers of the susceptibility to disease....
Oz, Inbal; Itkin, Yaron; Buchwalter, Asaf; Akulov, Katherine; Hod, Oded
At dry and clean material junctions of rigid materials the corrugation of the sliding energy landscape is dominated by variations of Pauli repulsions. These occur when electron clouds centered around atoms in adjacent layers overlap as they slide across each other. In such cases there exists a direct relation between interfacial surface (in)commensurability and superlubricity, a frictionless and wearless tribological state. The Registry Index is a purely geometrical parameter that quanti?es the degree of interlayer commensurability, thus providing a simple and intuitive method for the prediction of sliding energy landscapes at rigid material interfaces. In the present study, we extend the applicability of the Registry Index to non-parallel surfaces, using a model system of nanotubes motion on ?at hexagonal materials. Our method successfully reproduces sliding energy landscapes of carbon nanotubes on Graphene calculated using a Lennard-Jones type and the Kolmogorov-Crespi interlayer potentials. Furthermore, it...
Full Text Available Many renal lesions may result in chronic kidney disease if not detected early or treated properly. Glomerulonephritis is considered one of the leading causes of end-stage renal disease. The prevalence of different renal lesions were identified by inconsistent studies. The causes of inconsistencies include lack of unified methods in diagnosing and processing renal biopsies by different pathologists, patients selection′s bias for renal biopsy, and the variable policies and protocols adopted by different nephrologists. Establishment of renal biopsy registry may help to surmount these differences. In addition, combined data obtained from renal biopsy renal and replacement therapy registries can help study the long-term outcome of patients with renal diseases.
Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.
Ozen, Seza; Demirkaya, Erkan; Amaryan, Gayane
BACKGROUND AND AIM: Familial Mediterranean fever (FMF) is an autoinflammatory disease caused by mutations of the MEFV gene. We analyse the impact of ethnic, environmental and genetic factors on the severity of disease presentation in a large international registry. METHODS: Demographic, genetic...... Mediterranean patients whether they lived in their countries or western European countries. European patients had a lower frequency of the high penetrance M694V mutation and a significant delay of diagnosis (pfever episodes...
Full Text Available BACKGROUND: Pleural mesothelioma is a rare tumour associated with exposure to asbestos fibres. Fewer than than one-quarter of cases registered in the Quebec Tumour Registry (QTR have been compensated as work-related. While establishing a surveillance system, this led to questioning as to whether there has been over-registration of cases that are not authentic pleural mesotheliomas in the QTR.
Full Text Available The Registro Informatizado de Enfermedad TromboEmbólica (RIETE Registry is an ongoing, international, prospective registry of consecutive patients with acute venous thromboembolism (VTE designed to gather and analyze data on treatment patterns and outcomes in patients with acute VTE. It started in Spain in 2001, and 6 years later the database was translated into English with the aim to expand the Registry to other countries. In contrast to randomized controlled trials, there is no imposed experimental intervention: the management is determined solely by physicians. Thus, it provides data on patients with VTE in a real-world situation with an unselected patient population. Data from RIETE are hypothesis-generating and provide feedback from real-world clinical situations. So far, we learned about the natural history of VTE in patients with relative or absolute contraindications to anticoagulant therapy. We also learned interesting aspects on the natural history of VTE, and we built a number of prognostic scores to identify VTE patients at low, moderate, or high risk for adverse outcome.
Duron, Vincent; DeUgarte, Daniel; Bliss, David; Salazar, Ernesto; Casapia, Martin; Ford, Henri; Upperman, Jeffrey
Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%), motor vehicle collisions (23.3%), and blunt assault (10.5%). Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P analysis of data to enhance prevention and treatment of injuries in Iquitos.
de la Vega, Maria; da Silveira de Carvalho, Hellen M; Ventura Ríos, Lucio; Goycochea Robles, Maria V; Casado, Gustavo C
Rheumatoid arthritis is a systemic inflammatory disorder characterized by joint articular pain and disability. Although there is scarcity of data available on the incidence and prevalence of RA in Latin America, there is a growing recognition of this disease where chronic diseases are on the rise and infectious disease on the decline. RA is a substantial burden to patients, society, and the healthcare system. The heterogeneity identified within RA presents an opportunity for personalized medicine, especially in regions with such demographic diversity as that of Latin America. To understand the long-term effects of treatment for RA especially on safety, registries have been established, a number of which have been created in Latin America. Despite their weaknesses (e.g., lack of controls and randomization), registries have provided additional and complementary information on the use of biologics in clinical practice in Latin America and other regions. Although certain challenges remain in the implementation and maintenance of registries, they continue to provide real-life data to clinical practice contributing to improved patient care.
KAZUMATA, Ken; ITO, Masaki; UCHINO, Haruto; NISHIHARA, Hiroshi; HOUKIN, Kiyohiro
The number of clinical research papers published worldwide on moyamoya disease (MMD) has increased recently. However, the majority of the literature comprises retrospective single-center studies collecting data on small numbers of patients. Several multi-center studies are ongoing in Japan; however, the current data are insufficient for comprehensively outlining the various characteristics of MMD. To enhance our knowledge on epidemiologic, vascular, and genetic aspects of MMD, a prospective multicenter registry will be established in Japan that will help to streamline clinical research as well as improve clinical treatments and long-term outcomes. Patients with MMD or secondary moyamoya syndrome referred to the participating centers will be invited to the registry. Demographic and physiological parameters, along with neuroimaging data will be collected chronologically. Clinical events, including neurological, medical, and surgical interventions will be recorded. Whole blood samples will be collected. Extra- and intracranial vascular tissue, and/or cerebrospinal fluid will also be collected from patients who undergo surgical revascularization. These biospecimens will be stored at the repositories and utilized for genome-wide association studies for identifying genetic variants, as well as tissue-specific proteomic, and/or molecular analyses. Ethics approval will be obtained at all facilities collecting biospecimens. The registry will provide descriptive statistics on functional outcomes, surgical techniques used, medications, and neurological events stratified according to patients’ clinical characteristics. We expect this study to provide novel insights in the management of MMD patients and design better therapies. PMID:28070115
Full Text Available Systematic data collection in the field of assisted reproductive techniques is performed in Germany since 30 years. Since 1997, data collection is performed electronically and in a prospective way. In 1998, by a code of the German Medical Association participation at the registry has become mandatory for all IVF centres in Germany. Different software solutions can be used in the centres for data collection. All of them have to cooperate with a special DIRmod-DLL, controlling online plausibility and prospectivity of the collected data. More than one million treatment cycles have been reported in the annuals published since 1996 up to 2010. All in all 1.2 millions cycles are included in the registry. Clinical pregnancy rate increased continuously and miscarriage rate decreased. By reduction of the mean number of transferred embryos of about 20% the percentage of born triplets in relationship to all children born after ART decreased of about 80%. It can be shown with the huge number of documented cycles that political decisions exert a dominating influence on treatment and drug choice. The German IVF registry has been established over the last 30 years as an instrument of quality assurance and has experienced highest regard by colleagues and by the international scientific world.
Polk, Anne; Rasmussen, Jeppe V; Brorson, Stig;
Patient-reported outcome measures (PROMs) are used by some arthroplasty registries to evaluate results after surgery, but non-response may bias the results. The aim was to identify a potential bias in the outcome scores of subgroups in a cohort of patients from the Danish Shoulder Arthroplasty...... Registry (DSR) and to characterize non-responders....
Steinhagen-Thiessen, Elisabeth; Stroes, Erik; Soran, Handrean; Johnson, Colin; Moulin, Philippe; Iotti, Giorgio; Zibellini, Marco; Ossenkoppele, Bas; Dippel, Michaela; Averna, Maurizio R
A good understanding of the natural history of rare genetic lipid disorders is a pre-requisite for successful patient management. Disease registries have been helpful in this regard. Lipoprotein Lipase Deficiency (LPLD) is a rare, autosomal-recessive lipid disorder characterized by severe hypertriglyceridemia and a very high risk for recurrent acute pancreatitis, however, only limited data are available on its natural course. Alipogene tiparvovec (Glybera(®)) is the first gene therapy to receive Marketing Authorization in the European Union; GENIALL (GENetherapy In the MAnagement of Lipoprotein Lipase Deficiency), a 15-year registry focusing on LPLD was launched in 2014 as part of its Risk Management Plan. The aim of this publication is to introduce the GENIALL Registry within a structured literature review of registries in rare genetic lipid disorders. A total of 11 relevant initiatives/registries were identified (homozygous Familial Hypercholesterolemia (hoFH) [n = 5]; LPLD [n = 1]; Lysosomal Acid Lipase Deficiency [LALD, n = 1], detection of mutations in genetic lipid disorders [n = 4]). Besides one product registry in hoFH and the LALD registry, all other initiatives are local or country-specific. GENIALL is the first global prospective registry in LPLD that will collect physician and patient generated data on the natural course of LPLD, as well as long-term outcomes of gene therapy.
Young, T Kue; Kelly, Janet J; Friborg, Jeppe
registries, with direct age-standardization of rates to the world standard population. For comparison, the "world average" rates as reported in the GLOBOCAN database were used. FINDINGS: Age-standardized incidence rates by cancer sites were computed for the 8 Arctic States and 20 of their northern regions......, averaged over the decade 2000-2009. Cancer of the lung and colon/rectum in both sexes are the commonest in most populations. We combined the Inuit from Alaska, Northwest Territories, Nunavut and Greenland into a "Circumpolar Inuit" group and tracked cancer trends over four 5-year periods from 1989 to 2008...
Stefan, Daniela Cristina
Epidemiological studies around the world were analysed recently by the International Agency for Research on Cancer, demonstrating a positive correlation between consumption of red meat and processed meat and colorectal cancer. In South Africa (SA) there is a great variation in the incidence of this type of cancer between various ethnic groups, related to diet and other risk factors. Strengthening the SA cancer registry and co-ordinated research on diet and cancer are required to provide specific answers for our population.
... uses a surgical tool to remove the tumor.Mohs' surgery. Layers of cancer cells are removed one ... usually have not been approved by the U.S. Food and Drug Administration (FDA). The medicine may have ...
Oprea, Irina; Vaillant, Michel; Hesse, Malou; Jacobs, Loredana; Beissel, Jean; Wagner, Daniel R
The national LUCKY registry (Luxembourg Acute Myocardial Infarction Registry) confirms for Luxembourg that transfer of patients with acute myocardial infarction for primary percutaneous coronary intervention (PCI) is very effective. However, while mortality is low after PCI, a third of the patients with acute myocardial infarction develop severe left ventricular dysfunction. This may in part be explained by relatively long time delays between onset of symptoms and opening of the infarct-related artery, despite short distances between hospitals (time is myocardium). Surprisingly, in comparison with men, women are younger, have a higher body mass index and receive less evidence-based therapies such as statins before and after myocardial infarction. In conclusion, PCI has substantially improved the treatment of acute myocardial infarction in Luxembourg, but all actors including the patient have to keep efforts high to minimize time delays.
Pieterse, Quirine Dionne
To improve quality of cancer care treatment-related information is needed. This could be acquired by registries. Since January 1984, the Leiden University Medical Center (LUMC) collects prospectively more than 200 relevant clinical and pathological parameters of women with cervical cancer treated in
Sriplung, Hutcha; Sontipong, Sineenat; Martin, Nimit; Wiangnon, Surapon; Vootiprux, Visoot; Cheirsilpa, Arkom; Kanchanabat, Chol; Khuhaprema, Theeravud
There are five population-based cancer registries in Thailand in different regions of the country. Four of them (Chiang Mai, Khon Kaen, Bangkok, and Songkhla) have been operating since 1988 and the other (Lampang) since the early 1990s. These registries have published regular 3-year cancer incidence reports since the first in 1993 for the period 1989-1991. The objective of this article is to summarize the figures of cancer incidence in Thailand during 1995-1997. The population of Thailand in 1996, at the middle of the period, was 27 million males and 27.5 million females. Information of cancer cases residing in the five provinces was collected and abstracted from different sources. Age-standardized incidence rate (ASR) of cancer in males and females was calculated for each registry and that for the whole country was estimated using the five registries as representatives for the four geographical regions of Thailand. The estimated number of new cancer cases in 1996 for the whole country was 35,539 men and 38,476 women and the ASRs were 149.2 and 125.0 per 10(5) population in men and women respectively. Cancer incidences greatly differed from region to region. Lung cancer was the commonest in Chiang Mai and Lampang in the Northern region in both sexes. The incidence of liver cancer in Khon Kaen in the Northeastern region outnumbered all the others in both sexes; cholangiocarcinoma was the major type of liver cancer. In Bangkok, lung cancer was the most important cancer in males and breast cancer was in females. Though it was lung and cervix uteri cancer that ranked the first in men and women in Songkhla, the rate of oral and pharyngeal cancer was exceptionally higher than in other registries. The geographical variability in cancer patterns in Thailand reflects exposure of the population to different risk factors unique to the different regions. In the study as a whole, there are some methodological weak points in estimating the ASRs and number of cancer cases for the
Full Text Available Peter Hjertholm,1 Kaare Rud Flarup,1 Louise Mahncke Guldbrandt,1 Peter Vedsted1,2 1Research Center for Cancer Diagnosis in Primary Care, Department of Public Health, 2University Clinic for Innovative Health Care Delivery, Diagnostic Centre, Silkeborg Hospital, Department of Clinical Medicine, Aarhus University, Aarhus, Denmark Objective: The aim of this validation study was to assess the completeness of the registrations of chest X-rays (CXR in two different versions of the Danish National Patient Registry (DNPR. Material and methods: We included electronic record data on CXR performed on patients aged 40 to 99 years from nine radiology departments covering 20 Danish hospitals. From each department, we included data from three randomly selected weeks between 2004 and 2011 (reference standard. In two versions of the DNPR from the State Serum Institute (SSI and Statistics Denmark, respectively, we investigated the proportion of registered CXR compared to the reference standard. Furthermore, we compared the completeness of the recorded data according to the responsible department (main department. Results: We identified 11,235 patients and 12,513 CXR in the reference standard. The data from the SSI contained 12,265 (98% CXR, whereas the data from Statistics Denmark comprised 9,151 (73.1% CXR. The completeness of the SSI data was fairly constant across years, radiology departments, medical specialties, and age groups. The data from Statistics Denmark was almost complete in 2011 (95.8%. However, for the remaining study period, the data with radiology departments registered as the main department were lacking in the version from Statistics Denmark, and so the overall completeness was 73.1%. Conclusion: The completeness of CXR registrations varied between 98% and 73% depending on the information source, and this should be considered when investigating radiology services in the basis of DNPR. Keywords: chest X-ray, Danish National Patient Registry
Reich, K; Mrowietz, U; Radtke, M A; Thaci, D; Rustenbach, S J; Spehr, C; Augustin, M
The German Psoriasis Registry PsoBest was conducted in 2008 in order to investigate the long-term outcomes and safety of systemic treatments for moderate-to-severe psoriasis. Safety analysis of antipsoriatic drugs with special focus on serious adverse events (SAE) for infections, malignancies and major cardiac events (MACE) was done. Nationwide non-interventional patient treatment registry conducted in 251 active dermatology centers. Until June 2012, n = 2444 patients [40 % female; mean age 47.3 (SD 14.1) years; mean duration of disease 18.2 (SD 14.7) years] were recruited, including n = 1791 patients (3842 patient years) with conventional systemic drugs and n = 908 (3442 patient years) with biological drugs. Mean PASI (Psoriasis Area and Severity Index) at inclusion was 14.7, mean DLQI (Dermatology Life Quality Index) 11.1, mean BMI (Body Mass Index) 28.2. The overall rate of SAE per 100 patient years were 1.3 (SD 0.9) per 100 patient years in conventional systemic and 1.5 (SD 1.2) in biologics (p > 0.5, no significant difference). The rates per 100 patient years for single severe adverse events were as follows (systemic/biologics): serious infections, 0.33/0.65 [CI (confidence interval) 0.13-0.54/0.35-0.98]; MACE, 0.56/0.77 (CI 0.29-0.97/0.41-1.31); malignancies (except non-melanoma skin cancer), 0.46/0.49 (CI 0.22-0.84/0.21-0.97). There were no significant differences between single drugs in any of the safety parameters. The conventional systemic and biologic drugs for psoriasis show satisfying safety under routine psoriasis care in Germany with respect to infections, MACE and malignancies.
Gondos, Adam; Jansen, Lina; Heil, Jörg;
Background We examined time trends in axilla management among patients with early breast cancer in European clinical settings. Material and methods EUROCANPlatform partners, including population-based and cancer center-specific registries, provided routinely available clinical cancer registry data...... for a comparative study of axillary management trends among patients with first non-metastatic breast cancer who were not selected for neoadjuvant therapy during the last decade. We used an additional short questionnaire to compare clinical care patterns in 2014. Results Patients treated in cancer centers were...... younger than population-based registry populations. Tumor size and lymph node status distributions varied little between settings or over time. In 2003, sentinel lymph node biopsy (SLNB) use varied between 26% and 81% for pT1 tumors, and between 2% and 68% for pT2 tumors. By 2010, SLNB use increased to 79...
Dewdney, Summer B.; Lachance, Jason
Despite many perceived advances in treatment over the past few decades, cancer continues to present a significant health burden, particularly to the aging US population. Forces including shrinking funding mechanisms, cost and quality concerns, as well as disappointing clinical outcomes have driven a surge of recent efforts into utilizing the technological innovation that has permeated other industries by leveraging large and complex data sets, so called “big data.” In this review, we will review some of the history of oncology data collection, including the earliest data registries, as well as explore the future directions of this new brand of research while highlighting some of the more recent and promising efforts to harness the power of the electronic health record and the multitude of data co-located there, in an effort to improve individualized cancer-related outcomes in rapid real time.
Brent Daniel Kerger
Full Text Available The diagnosis of mesothelioma is not always straightforward, despite known immunohistochemical markers and other diagnostic techniques. One reason for the difficulty is that extrapleural tumors resembling mesothelioma may have several possible etiologies, especially in cases with no meaningful history of amphibole asbestos exposure. When the diagnosis of mesothelioma is based on histologic features alone, primary mesotheliomas may resemble various primary or metastatic cancers that have directly invaded the serosal membranes. Some of these metastatic malignancies, particularly carcinomas and sarcomas of the pleura, pericardium and peritoneum, may undergo desmoplastic reaction in the pleura, thereby mimicking mesothelioma, rather than the primary tumor. Encasement of the lung by direct spread or metastasis, termed pseudomesotheliomatous spread, occurs with several other primary cancer types, including certain late-stage tumors from genetic cancer syndromes exhibiting chromosomal instability. Although immunohistochemical staining patterns differentiate most carcinomas, lymphomas, and mestastatic sarcomas from mesotheliomas, specific genetic markers in tumor or somatic tissues have been recently identified that may also distinguish these tumor types from asbestos-related mesothelioma. A registry for genetic screening of mesothelioma cases would help lead to improvements in diagnostic criteria, prognostic accuracy and treatment efficacy, as well as improved estimates of primary mesothelioma incidence and of background rates of cancers unrelated to asbestos that might be otherwise mistaken for mesothelioma. This information would also help better define the dose-response relationships for mesothelioma and asbestos exposure, as well as other risk factors for mesothelioma and other mesenchymal or advanced metastatic tumors that may be indistinguishable by histology and staining characteristics.
Ageno, Walter; Riva, Nicoletta; Schulman, Sam; Bang, Soo Mee; Sartori, Maria Teresa; Grandone, Elvira; Beyer-Westendorf, Jan; Barillari, Giovanni; Di Minno, Matteo Nicola Dario; Dentali, Francesco
Treatment of splanchnic vein thrombosis (SVT) is a clinical challenge due to heterogeneity of clinical presentations, increased bleeding risk, and lack of evidences from clinical trials. We performed an international registry to describe current treatment strategies and factors associated with therapeutic decisions in a large prospective cohort of unselected SVT patients. A total of 613 patients were enrolled (mean age 53.1 years, standard deviation ± 14.8); 62.6% males; the majority (468 patients) had portal vein thrombosis. Most common risk factors included cirrhosis (27.8%), solid cancer (22.3%), and intra-abdominal inflammation/infection (11.7%); in 27.4% of patients, SVT was idiopathic. During the acute phase, 470 (76.7%) patients received anticoagulant drugs, 136 patients (22.2%) remained untreated. Incidental diagnosis, single vein thrombosis, gastrointestinal bleeding, thrombocytopenia, cancer, and cirrhosis were significantly associated with no anticoagulant treatment. Decision to start patients on vitamin K antagonists after an initial course of parenteral anticoagulation was significantly associated with younger age, symptomatic onset, multiple veins involvement, and unprovoked thrombosis. Although a nonnegligible proportion of SVT patients did not receive anticoagulant treatment, the majority received the same therapies recommended for patients with usual sites thrombosis, with some differences driven by the site of thrombosis and the pathogenesis of the disease.
Cheung, Chi Yuen; Lam, Man Fai; Chow, Kai Ming; Lee, William; Cheng, Yuk Lun; Yuen, Sze Kit; Wong, Ping Nam; Mo, Ka Leung; Leung, Kay Tai; Wong, Sze Ho; Ho, Yiu Wing; Chau, Ka Foon
Kidney transplant recipients have increased risk of cancers when compared with the general population. Hepatocellular carcinoma (HCC) is extremely important in Asia where hepatitis B virus (HBV) infection is endemic. The aim is to study the epidemiological and clinical aspects of all de novo HCC in our kidney transplant recipients. Moreover, various preventive strategies which may help to optimize the outcome will also be discussed. A retrospective review of all patients who developed HCC after kidney transplantation between May 1972 and December 2011 in Hong Kong, based on the data from Hong Kong Renal Registry. After a follow-up period of 40,246 person-years, 20 patients (males 15: females 5) developed HCC. The annual incidence was 49.7/100,000 persons per year. Among them, 16 were HBV carriers, 2 were hepatitis C (HCV) carriers and 2 had HBV and HCV co-infection. Presence of HBV infection was associated with 78-fold higher risk for HCC development. Majority (85%) were asymptomatic when HCC was diagnosed by ultrasound or alpha-fetoprotein surveillance. All patients diagnosed by surveillance received active treatment while 2/3 of symptomatic patients could only receive symptomatic care and died rapidly. In conclusion, HBV infection is the major etiological factor for HCC development in kidney transplant recipients in HBV endemic areas. Regular HCC surveillance appeared to be able to detect early stage cancers which are amenable to treatment and offer the best hope of cure.
Richesson, Rachel; Sutphen, Rebecca; Shereff, Denise; Krischer, Jeff
The Rare Diseases Clinical Research Network (RDCRN) Contact Registry has grown in size and scope since it was first reported in this journal in 2007. In this paper, we reflect on our seven years’ experience developing and expanding the RDCRN Contact Registry to include many more rare diseases. We present the functional and data requirements that motivated this registry, and the new features and policies that have been developed since. Given the high costs and long-term commitme...
Grey literature (site notebooks, reports etc.) and research data in archaeology are invaluable sources of information currently lacking a central reference registry in Germany. This paper discusses requirements and the underlying data model of a registry to be developed for find spots and archaeological excavation data within the IANUS project at the German Archaeological Institute. This registry is to collect information on archaeological investigations data for a finding aid service. The fo...
Palafox, Neal A; Yamada, Seiji; Ou, Alan C; Minami, Jill S; Johnson, David B; Katz, Alan R
Between November 1998 and December 1999, trained medical record abstractors visited the Micronesian jurisdictions of Chuuk, Kosrae, Pohnpei, and Yap (the four states of the Federated States of Micronesia), as well as the Republic of Palau (Belau), the Republic of Kiribati, the Republic of the Marshall Islands (RMI), and the Republic of Nauru to review all available medical records in order to describe the epidemiology of cancer in Micronesia. Annualized age-adjusted, site-specific cancer period prevalence rates for individual jurisdictions were calculated. Site-specific cancer occurrence in Micronesia follows a pattern characteristic of developing nations. At the same time, cancers associated with developed countries are also impacting these populations. Recommended are jurisdiction-specific plans that outline the steps and resources needed to establish or improve local cancer registries; expand cancer awareness and screening activities; and improve diagnostic and treatment capacity.
Egholm, Gro; Madsen, Morten; Thim, Troels;
BACKGROUND: Registry-based monitoring of the safety and efficacy of interventions in patients with ischemic heart disease requires validated algorithms. OBJECTIVE: We aimed to evaluate algorithms to identify acute myocardial infarction (AMI) in the Danish National Patient Registry following...... additional information from the Danish National Patient Registry yield different sensitivities, specificities, and predictive values in registry-based detection of AMI following PCI. We were able to identify AMI following PCI with moderate-to-high validity. However, the choice of algorithm will depend...
... officers to take advantage of commercially available market research methods to identify capabilities to..., contracting officers are required to consult the registry during market research and acquisition planning....
Janerich, D T; Burnett, W S; Feck, G; Hoff, M; Nasca, P; Polednak, A P; Greenwald, P; Vianna, N
Data from the New York Cancer Registry show no evidence for higher cancer rates associated with residence near the Love Canal toxic waste burial site in comparison with the entire state outside of New York City. Rates of liver cancer, lymphoma, and leukemia, which were selected for special attention, were not consistently elevated. Among the other cancers studied, a higher rate was noted only for respiratory cancer, but it was not consistent across age groups and appeared to be related to a high rate for the entire city of Niagara Falls. There was no evidence that the lung cancer rate was associated with the toxic wastes buried at the dump site.
Ali, T; Schved, J F
Creating a national registry for bleeding disorders is a major step in establishing a National Hemophilia Care Program in all countries. Creating such a registry which would contain accurate and regularly updated data, including laboratory analysis confirmed by a reference laboratory established at the Syrian Hemophilia Society. Blood samples were drawn and analysed in the Society reference laboratory for the following screening tests: prothrombin time (PT), APTT and coagulation factor assays. Inhibitor detection and VWF RiCof were performed depending on the result of the screening tests. HBs Ag, anti-HCV, anti-HIV 1+2 and syphilis tests were also performed to detect transfusion transmitted agents (TTA). Diagnosis of the bleeding disorder type was confirmed for 760 of these cases. Among the 760 confirmed patients, 82.5% had haemophilia. Among these, 89.6%were haemophilia A; 10.4% were haemophilia B; 8.3% had VWD; 9.2% had other rare bleeding disorders as follows: 1.2% FVII deficiency, 0.7% FV deficiency, 1.8% F1 deficiency, 0.4% FX deficiency, 1.4% platelets dysfunctions (mainly Glanzmann Thrombasthenia) and 3.7% had combined FVIII and FV deficiency. Eighty (21.3%) cases of 375 screened for transfusion transmitted agents were positive for at least one infection: 0.5% were HBsAg positive, 19.7% were anti-HCV positive, 0.8% had combined HBsAg and anti-HCV positivity and 0.3% was anti-Syphilis positive. All patients were negative for HIV1 and HIV2. The preliminary data presented here follow known data on haemophilia A, haemophilia B and VWD disease. This registry will certainly help in improving haemophilia care in Syria.
Weber LeBrun, Emily; Adam, Rony A; Barber, Matthew D; Boyles, Sarah Hamilton; Iglesia, Cheryl B; Lukacz, Emily S; Moalli, Pamela; Moen, Michael D; Richter, Holly E; Subak, Leslee L; Sung, Vivian W; Visco, Anthony G; Bradley, Catherine S
Pelvic floor disorders affect up to 24% of adult women in the United States, and many patients with pelvic organ prolapse (POP) choose to undergo surgical repair to improve their quality of life. While a variety of surgical repair approaches and techniques are utilized, including mesh augmentation, there is limited comparative effectiveness and safety outcome data guiding best practice. In conjunction with device manufacturers, federal regulatory organizations, and professional societies, the American Urogynecologic Society developed the Pelvic Floor Disorders Registry (PFDR) designed to improve the quality of POP surgery by facilitating quality improvement and research on POP treatments. The PFDR will serve as a resource for surgeons interested in benchmarking and outcomes data and as a data repository for Food and Drug Administration-mandated POP surgical device studies. Provider-reported clinical data and patient-reported outcomes will be collected prospectively at baseline and for up to 3 years after treatment. All data elements including measures of success, adverse events, and surgeon characteristics were identified and defined within the context of the anticipated multifunctionality of the registry, and with collaboration from multiple stakeholders. The PFDR will provide a platform to collect high-quality, standardized patient-level data from a variety of nonsurgical (pessary) and surgical treatments of POP and other pelvic floor disorders. Data from this registry may be used to evaluate short- and longer-term treatment outcomes, patient-reported outcomes, and complications, as well as to identify factors associated with treatment success and failure with the overall goal of improving the quality of care for women with these conditions.
Full Text Available Abstract Background Cancer is a major cause of death in domestic animals. Furthermore, many forms of pet neoplasm resemble that of their human counterparts in biologic behaviour, pathologic expression, and recognised risk factors. In April 2005, a pilot project was activated so as to establish a dog and cat tumour registry living in the Venice and Vicenza provinces (Veneto Region, north-eastern Italy, with the aim of estimating the incidence of spontaneous tumours. Results Through a telephone survey, the estimates of canine and feline populations of the catchment area turned out to be of 296,318 (CI +/- 30,201 and 214,683 (CI +/- 21,755 subjects, respectively. During the first three years, overall 2,509 canine and 494 feline cases of neoplasia were diagnosed. In dogs, the estimated annual incidence rate (IR per 100,000 dogs for all tumours was 282 in all the catchment area, whereas in cats the IR was much lower (IR = 77. Malignant and benign tumours were equally distributed in male and female dogs, whereas cats had a 4.6-fold higher incidence of malignant tumours than benign. In both dogs and cats, purebreds had an almost 2-fold higher incidence of malignant tumours than mixed breeds. Tumour incidence increased with age in both dog and cat populations. Conclusion This study has provided estimates of incidence of spontaneous neoplasm in companion animals. Further attempts will be made to increase the accuracy in the population size assessment and to ascertain the real gap with the official regional canine demographic registry. Veterinary practitioners may also benefit from the tumour registry insofar they may obtain data for specific breeds, age groups or geographical areas.
Shoikhet, Ya.N.; Kiselev, V.I.; Zaitsev, E.V.; Kolyado, I.B.; Konovalov, B.Yu. [Institute of Regional Medico-Ecological Problems, P.O. Box 4664, Barnaul 656043 (Russian Federation); Bauer, S.; Grosche, B.; Burkart, W. [Federal Office of Radiation Protection, Institute of Radiation Hygiene, Oberschleissheim (Germany)
A registry of the rural population in the Altai region exposed to fallout from nuclear tests at the Semipalatinsk test site (STS) was established more than four decades after the first Soviet nuclear explosion on August 29, 1949. Information about individuals living in an exposed and a control area was collected using all available local sources, such as kolkhoz documentation, school registries, medical treatment records and interviews with residents. As a result, a database comprising an exposed group of 39 179 individuals from 53 Altai region villages, 6769 external and 3303 internal controls was compiled. For several settlements, effective dose estimates reached the level of 1.5 Sv, while the average effective dose estimate in the exposed group was 340 mSv. Dosimetric data, vital status information and health records gathered at rayon and village medical facilities are held in the registry. Cause-of-death information for deceased residents is obtained from death registration forms archived at the Altai region vital statistics office. At present, a follow-up of approximately 40% of the population exposed in 1949 has been done. More will be added by searching for migrants to the larger towns of the Altai region, i.e. Barnaul, Rubtsovsk and Biisk. In order to assess the influence of radiation exposure, analytical studies with a case-control design for stomach and lung cancer are currently being prepared. The number of known cases is sufficient to detect an odds ratio of 1.5 at the 95% confidence level. Epidemiological studies in populations affected by fallout from STS may be equally important to the atomic bomb survivors' study for the direct quantification of radiation effects. The range of exposure rates experienced will extend the acute high-dose-rate findings from Hiroshima/Nagasaki towards acute and protracted lower exposures, which are more relevant for radiation protection issues. (orig.)
Koch-Henriksen, Nils; Stenager, Egon; Brønnum-Hansen, Henrik
Introduction: This paper reviews the most important articles using data from the Danish Multiple Sclerosis Registry (DMSR) published in the past 25 years. Research topics: These articles include: descriptive epidemiological studies, indicating that the female incidence of multiple sclerosis (MS......) in Denmark has increased considerably; follow-up studies on social events, showing that patients at a high rate lose their working ability and their spouses/partners; mortality studies, demonstrating a considerable excess mortality; cause-of-death studies; comorbidity studies; and, most importantly...
Qurieshi, Mariya A.; Khan, S. M. Salim; Muneer A. Masoodi; Qurieshi, Uruj; Ain, Quratul; Jan, Yasmeen; Haq, Inaamul; Ahmad, Sheikh Zahoor
Cancer is a leading cause of mortality and morbidity in the world. The aim of the present study was to measure the pattern of different cancers in Kashmir, India, a cancer belt with peculiar cancer profile. A hospital based cancer registry was started by the Department of Community Medicine, Government Medical College, Srinagar, in January 2006, wherein information was collected from cancer patients who were diagnosed and treated in the hospital. Data has been analysed for a period extending ...
D. E. Karateev
Full Text Available EU Registries Forum Meeting took place 2–3 March 2015 in Chantilly, France. Leading experts in the field participated in the forum. Registersnot only of Western Europe but also of Russia, USA, Canada and Japan were presented at the meeting. The most important directions of development of modern registers of patients with rheumatic diseases are the inclusion of comprehensive data on the process of care in practice, the integration of the data of registers in different countries, the active collection of information on the application of the new anti-rheumatic drugs
Thomsen, SF; Ulrik, Charlotte Suppli; Kyvik, KO;
OBJECTIVE: To estimate to what extent the same genetic and environmental risk factors influence asthma, hay fever and eczema. DESIGN: From the nationwide Danish Twin Registry, twin cohorts born between 1953 and 1982 were contacted for a questionnaire survey, and a total of 29 183 twin individuals...... role. These results can prove informative when counselling families with atopy, and may furthermore be used to guide the search for pleiotropic genes of importance for these diseases.......OBJECTIVE: To estimate to what extent the same genetic and environmental risk factors influence asthma, hay fever and eczema. DESIGN: From the nationwide Danish Twin Registry, twin cohorts born between 1953 and 1982 were contacted for a questionnaire survey, and a total of 29 183 twin individuals...... in liability between the different diseases were 0.57 (95% CI 0.54-0.59) for asthma and hay fever, 0.40 (95% CI 0.36-0.42) for asthma and eczema, and 0.33 (95% CI 0.29-0.36) for hay fever and eczema. Decomposition of these correlations into their genetic and environmental contributions showed that shared genes...
Nagai, M.; Ono, M.; Shibasaki, R.
Standardization organizations are working for syntactic and schematic level of interoperability. At the same time, semantic interoperability must be considered as a heterogeneous condition and also very diversified with a large-volume data. The ontology registry has been developed and ontological information such as technical vocabularies for earth observation has been collected for data interoperability arrangement. This is a very challenging method for earth observation data interoperability because collaboration or cooperation with scientists of different disciplines is essential for common understanding. Multiple semantic MediaWikis are applied to register and update technical vocabularies as a part of the ontology registry, which promises to be a useful tool for users. In order to invite contributions from the user community, it is necessary to provide sophisticated and easy-to-use tools and systems, such as table-like editor, reverse dictionary, and graph representation for sustainable development and usage of ontological information. Registered ontologies supply the reference information required for earth observation data retrieval. We proposed data/metadata search with ontology such as technical vocabularies and visualization of relations among dataset to very large scale and various earth observation data.
Full Text Available There are many carcinogenetic elements in industry and it is for this reason that study and research concerning the effect of these materials is carried out on a national and international level. The establishment and growth of cancer are affected by different factors in two main areas:-1 The nature of the human or animal including sex, age, point and method of entry, fat metabolism, place of agglomeration of carcinogenetic material, amount of material absorbed by the body and the immunity of the body.2 The different nature of the carcinogenetic material e.g. physical, chemical quality, degree of solvency in fat and purity of impurity of the element. As the development of cancer is dependent upon so many factors, it is extremely difficult to determine whether a causative element is principle or contributory. Some materials are not carcinogenetic when they are pure but become so when they combine with other elements. All of this creates an industrial health problem in that it is almost impossible to plan an adequate prevention and safety program. The body through its system of immunity protects itself against small amounts of carcinogens but when this amount increases and reaches a certain level the body is not longer able to defend itself. ILO advises an effective protection campaign against cancer based on the Well –equipped laboratories, Well-educated personnel, the establishment of industrial hygiene within factories, the regular control of safety systems, and the implementation of industrial health principles and research programs.
André, Maria Rosario; Amaral, Sandra; Mayer, Alexandra; Miranda, Ana
Objectivos: A incidência do cancro da mama em Portugal é inferior à média europeia, sendo, ainda assim, a neoplasia mais frequente na mulher. As taxas de mortalidade por cancro de mama apresentam uma distribuição heterogénea nas diferentes regiões de Portugal. São múltiplos os factores que podem influenciar esta distribuição, incluindo aspectos demográficos e socioeconómicos, características biológicas tumorais, e o acesso aos cuidados de saúde. O objectivo deste estudo é detectar diferenças na sobrevivência do cancro de mama feminino e os principais factores associados. Material e Métodos: Estudo de coorte, de base populacional e orientação retrospectiva, com follow-up. Foram incluídos casos de cancro de mama diagnosticados em 2005 e residentes na região sul de Portugal, tendo os dados sido recolhidos a partir da base de dados do Registo Oncológico Regional Sul (ROR-Sul) e complementados com dados dos processos clínicos. Resultados: Foram incluídos neste estudo 1 354 doentes. Observaram-se as seguintes variações geográficas: na distribuição etária, com uma população envelhecida no Alentejo; na distribuição de sub-tipos tumorais, com uma maior incidência de tumores HER2- positivo no Algarve e maior incidência de tumores HER2-negativo na Região Autónoma da Madeira. A sobrevivência global estimada aos 5 anos foi de 80%, com uma associação significativa com o estadio, receptores hormonais e status HER2. Não foram identificadas diferenças na sobrevivência entre mulheres residentes em regiões geográficas distintas. Discussão: Apesar das diferenças observadas na distribuição etária e de sub-tipos tumorais entre regiões geográficas, os nossos resultados não suportam a existência de discrepâncias na sobrevivência do cancro de mama entre estas regiões. As características biológicas tumorais parecem ser os principais factores associados à sobrevivência do cancro de mama feminino na nossa população. Conclusões: O nosso estudo confirma a associação entre a sobrevivência e o estadio, receptores hormonais e status HER2. No entanto, não foram observadas diferenças na sobrevivência entre diferentes regiões geográficas de residência.
Dal J; Skou N; Nielsen EH; Jørgensen JOL; Pedersen L
Jakob Dal,1 Nikolaj Skou,1 Eigil Husted Nielsen,2 Jens Otto Lunde Jørgensen,1 Lars Pedersen3 1Department of Endocrinology, Aarhus University Hospital, Aarhus, 2Department of Endocrinology, Aalborg University Hospital, Aalborg, 3Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Background: The incidence of acromegaly is uncertain, since population-based studies are few. In the absence of a specific acromegaly registry, the Danish National Registry of ...
Rasmussen, Christina B; Jensen, Allan; Albieri, Vanna;
BACKGROUND: Pelvic inflammatory disease (PID) has been proposed as a risk factor for ovarian cancer. However, the existing literature on the association between PID and ovarian cancer risk is inconclusive, and only few cohort studies have been conducted. METHODS: Using nationwide Danish registries...
Pottegård, Anton; Friis, Søren; Christensen, René dePont;
PURPOSE: We present a systematic screening for identifying associations between prescribed drugs and cancer risk using the high quality Danish nationwide health registries. METHODS: We identified all patients (cases) with incident cancer in Denmark during 2000-2012 (n=278,485) and matched each ca...
Schram, M.T.; Frijters, D.; Lisdonk, E.H. van de; Ploemacher, J.; Craen, A.J.M. de; Waal, M.W.M. de; Rooij, F.J. van; Heeringa, J.; Hofman, A.; Deeg, D.J.H.; Schellevis, F.G.
The aim of the study was to investigate how settings and registry characteristics affect the prevalence and nature of multimorbidity in elderly individuals. We used data from three population-based studies, two general practitioner registries, one hospital discharge register, and one nursing home re
Rider, Lisa G.; Dankó, Katalin; Miller, Frederick W.
Purpose of review Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers’ collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes. Recent findings We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation. Summary Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways. PMID:25225838
Hume, Keith M.; Crotty, Catherine A.; Simmons, Christopher J.; Neumeister, Michael W.; Chung, Kevin C.
Clinical data registries are commonly used worldwide and are implemented for a variety of purposes ranging from physician or facility clinic logs for tracking patients, collecting outcomes data, to measuring quality improvement or safety of medical devices. In the United States, the Food and Drug Administration has used data collected through registries to facilitate the drug and device regulatory process, ongoing surveillance during the product life-cycle, and for disease appraisals. Furthermore, the Centers for Medicare and Medicaid Services, in certain instances, base registry participation and submitting data to registries as factors for reimbursement decisions. The purpose of this article is to discuss the use of clinical data registries, the role that medical specialty societies, in particular the American Society of Plastic Surgeons and The Plastic Surgery Foundation, can have in the development and management of registries, and the opportunities for registry use in Plastic Surgery. As outcomes data are becoming essential measures of quality healthcare delivery, participating in registry development and centralized data collection has become a critical effort for Plastic Surgery to engage in to proactively participate in the national quality and performance measurement agenda. PMID:23806935
Haar, N. Ter; Lachmann, H.; Ozen, S.; Woo, P.; Uziel, Y.; Modesto, C.; Kone-Paut, I.; Cantarini, L.; Insalaco, A.; Neven, B.; Hofer, M.; Rigante, D.; Al-Mayouf, S.; Touitou, I.; Gallizzi, R.; Papadopoulou-Alataki, E.; Martino, S.; Kuemmerle-Deschner, J.; Obici, L.; Iagaru, N.; Simon, A.; Nielsen, S.; Martini, A.; Ruperto, N.; Gattorno, M.; Frenkel, J.
OBJECTIVE: To evaluate the response to treatment of autoinflammatory diseases from an international registry and an up-to-date literature review. METHODS: The response to treatment was studied in a web-based registry in which clinical information on anonymised patients with autoinflammatory diseases
Lohse, Sarah Rytter; Farkas, Dóra Körmendiné; Lohse, Nicolai;
The purpose of this study is to validate the diagnosis of spontaneous abortion (SA) recorded in the Danish National Registry of Patients (DNRP).......The purpose of this study is to validate the diagnosis of spontaneous abortion (SA) recorded in the Danish National Registry of Patients (DNRP)....
Pedersen, Line Merete Blak; Klarlund, Mette; Jacobsen, Søren;
Discharge diagnoses following hospital admissions in Denmark are recorded in the Danish National Patient Registry (NPR). Such routine hospitalization records may serve as useful research tools in epidemiological studies. The aim of the study was to provide measures of the validity and completeness...... general carefulness when using non-audited registries for research in RA....
Hommel, Kristine; Rasmussen, Søren; Madsen, Mette;
The Danish National Registry on Regular Dialysis and Transplantation (NRDT) provides systematic information on the epidemiology and treatment of end-stage chronic kidney disease in Denmark. It is therefore of major importance that the registry is valid and complete. The aim of the present study...
Outcome prediction models play an invaluable role in the evaluation and improvement of modern trauma care. Trauma registries underlying these outcome prediction models need to be accurate, complete and consistent. This thesis focused on the opportunities and limitations of trauma registries and outc
Howell, Lisa A.; Sinicrope, Pamela S.; Brockman, Tabetha A.; Patten, Christi A.; Decker, Paul A; Ehlers, Shawna L.; Nadeau, Ashley; Rabe, Kari G.; Breitkopf, Carmen Radecki; Gloria M Petersen
Background Cancer is a shared family experience that might provide an opportunity for lifestyle change among at-risk family members. The purpose of this study was to assess receptivity and preferences for cancer risk reduction programs among at-risk family members with two or more relatives affected with pancreas cancer. Methods We surveyed 401 at-risk family members in an existing pancreatic cancer family registry. Participants completed a mailed survey which examined demographic, medical, a...
Visser, O.; Leeuwen, van F.E.
While stage is the most important factor for determining cancer survival, population-based survival data according to stage are rarely presented. We present such data for a large population diagnosed with cancer in the area covered by the Amsterdam Cancer Registry for the period 1989-2001 (n=108,251
Bhoo-Pathy, Nirmala; Hartman, Mikael; Yip, Cheng-Har; Saxena, Nakul; Taib, Nur Aishah; Lim, Siew-Eng; Iau, Philip; Adami, Hans-Olov; Bulgiba, Awang M.; Lee, Soo-Chin; Verkooijen, Helena M.
Background: The burden of breast cancer in Asia is escalating. We evaluated the impact of ethnicity on survival after breast cancer in the multi-ethnic region of South East Asia. Methodology/Principal Findings: Using the Singapore-Malaysia hospital-based breast cancer registry, we analyzed the assoc
Praestegaard, Camilla; Kjaer, Susanne K; Andersson, Michael;
diagnosed with breast cancer during 1977-2007 from the nationwide clinical database of the Danish Breast Cancer Cooperative Group, was followed for a primary skin cancer [basal cell carcinoma (BCC), squamous cell carcinoma (SCC) or melanoma] in the Danish Cancer Registry supplemented by data on BCC and SCC...... compared to non-users. The observed number of these types of cancer (37 SCCs and 38 melanomas among users) did not allow stratification on calendar-period. The overall IRR for BCC was 0.96 (95 % CI 0.84-1.09), but the IRR differed by menopausal status and calendar-period at diagnosis of breast cancer...
Troelsen, Anders; Malchau, Erik; Sillesen, Nanna Hylleholt
and to analyze age-stratified risk of revision comparing cemented, hybrid, and uncemented fixation as reported by national hip arthroplasty registries. METHODS: Data were extracted from the annual reports of seven national hip arthroplasty registries; we included all national registries for which annual reports...... were available in English or a Scandinavian language, if the registry had a history of more than 5 years of data collection. RESULTS: Current use of uncemented fixation in primary THAs varies between 15% in Sweden and 82% in Canada. From 2006 to 2010 the registries of all countries reported overall...... increases in the use of uncemented fixation; Sweden reported the smallest absolute increase (from 10% to 15%), and Denmark reported the greatest absolute increase (from 47% to 68%). Looking only at the oldest age groups, use of uncemented fixation also was increasing during the period. In the oldest age...
markdownabstract__Abstract__ The incidence of skin cancer is increasing in the Netherlands since 1989, the first year of the Netherlands Cancer Registry (NCR). In 2010 more than 43,000 patients were newly diagnosed with skin cancer in the Netherlands. During a life time at least 1 in 5 persons living in the Netherlands will develop skin cancer. The most common skin cancer is basal cell carcinoma (BCC), followed by squamous cell carcinoma (SCC) and melanoma. BCC and SCC combined are often refe...
... and mixtures with Chemical Abstract Service Registry Numbers. 799.5000 Section 799.5000 Protection of... Testing consent orders for substances and mixtures with Chemical Abstract Service Registry Numbers. This... adopted under 40 CFR part 790. Listed below in Chemical Abstract Service (CAS) Registry Number order...
Johnsen, Søren P; Overvad, Kim; Sørensen, Henrik Toft;
We examined the predictive value of the discharge diagnoses of stroke and transient ischemic attack (TIA) in The National Registry of Patients (NRP) for participants in the Danish cohort study “Diet, Cancer, and Health.” We retrieved all probable incident registered cases of stroke and TIA, i...... and intracerebral hemorrhage were confirmed in 14 of 29 cases (48.3%, 95% CI: 29.4–67.5%), and 23 of 35 cases (65.7%, 95% CI: 47.8–80.9%), respectively. By contrast, ischemic stroke and unspecified stroke were confirmed in 99 of 113 cases (87.6%, 95% CI: 80.1–93.1%) and 152 of 200 cases (76.0%, 95% CI: 69...
Full Text Available Filiation is, in a broad sense, an identity element, dependent or not on the biological relationships, that represents, in some situations, either a condition for the existence of a right (e.g. the right to inheritance or for example to conclude a legal act (e.g. marriage. The proof of filiation is the birth certificate drawn up in civil registry or on the material basis of birth, or on the basis of the adoption judgment. In this paper, we aimed at analyzing the final part of the adoption procedure, the subsequent stage for becoming final the adoption judgment, which sets face to face the adopting person or family and the administrative authority, obliged to execute the judge's decision, i.e. to create a filiation relation between the adopted on the one hand and the adoptive parent or parents.
Labrèche, France; Case, Bruce W; Ostiguy, Gaston; Chalaoui, Jean; Camus, Michel; Siemiatycki, Jack
BACKGROUND: Pleural mesothelioma is a rare tumour associated with exposure to asbestos fibres. Fewer than than one-quarter of cases registered in the Quebec Tumour Registry (QTR) have been compensated as work-related. While establishing a surveillance system, this led to questioning as to whether there has been over-registration of cases that are not authentic pleural mesotheliomas in the QTR. OBJECTIVE: To assess whether registered cases of pleural mesothelioma could be confirmed. METHODS: A medical chart review was designed to assess the proportion of mesothelioma cases newly registered in the QTR in 2001/2002 that could be confirmed. For each registered case, clinical, medical imaging and pathology information were sought and, occasionally, additional immunohistochemistry staining was obtained. Three specialists – a chest physician, a radiologist and a pathologist – reviewed the available information and material, coding each mesothelioma case as to degree of certainty of the mesothelioma diagnosis. RESULTS: The QTR reported 190 incident cases of mesothelioma (81% males) for the period. The specialists classified 81% of charts as ‘certain/probable’or ‘possible’ mesotheliomas, 8% as ‘unlikely to be a mesothelioma’ and 11% as ‘not a mesothelioma’. After excluding chart summaries of unsatisfactory quality, 87% to 88% of the charts were classified as ‘certain/probable’ or ‘possible’ mesotheliomas, and 9% to 11% were still considered ‘not a mesothelioma’. CONCLUSION: Tumour registry data are a valid source of information for mesothelioma surveillance. While there is some over-registration of mesothelioma cases in the QTR, a significant majority of registered cases appeared to be authentic. Over-registration cannot explain the greater proportion of cases that were not compensated. PMID:22536579
Cardwell, Chris R; Pottegård, Anton; Vaes, Evelien
BACKGROUND: Preclinical studies have demonstrated that propranolol inhibits several pathways involved in breast cancer progression and metastasis. We investigated whether breast cancer patients who used propranolol, or other non-selective beta-blockers, had reduced breast cancer-specific or all......-cause mortality in eight European cohorts. METHODS: Incident breast cancer patients were identified from eight cancer registries and compiled through the European Cancer Pharmacoepidemiology Network. Propranolol and non-selective beta-blocker use was ascertained for each patient. Breast cancer-specific and all......-analysis techniques. Dose-response analyses by number of prescriptions were also performed. Analyses were repeated investigating propranolol use before cancer diagnosis. RESULTS: The combined study population included 55,252 and 133,251 breast cancer patients in the analysis of breast cancer-specific and all...
Steliarova-Foucher, Eva; O'Callaghan, Mark; Ferlay, Jacques; Masuyer, Eric; Rosso, Stefano; Forman, David; Bray, Freddie; Comber, Harry
Population-based cancer registries provide indispensable information on cancer incidence and survival, which cannot be obtained by any other means. It is clear that complete and effective use of these data is essential for cancer control, but sharing this information in a uniform, timely and user-friendly manner has been somewhat limited up to now. The European Cancer Observatory (ECO, http://eco.iarc.fr) has been developed in the framework of the EUROCOURSE project (EUROpe against Cancer: Optimisation of Use of Registries for Scientific Excellence in Research) as a comprehensive resource combining all the information currently available in Europe on cancer incidence, mortality, survival and prevalence. The website provides analytical and presentation tools to examine national estimates for 2012 in 40 European countries (EUCAN), data for 130 national or sub-national areas covered by cancer registries for up to 60 years, until 2011 (EUREG) and a planned mechanism for data download (European Cancer Incidence and Mortality (EUROCIM)). The generated statistics outline the considerable variability across Europe in the rates of all major cancer types and help identify key concerns that need to be addressed by public health policies e.g. the unprecedented rise of lung cancer incidence in women with its full impact expected within a decade or so. The support, maintenance and further development of the ECO website should be a high priority for European cancer policymakers, to continue providing this unique information to health professionals, researchers and the general public in Europe and beyond.
Li, R.; Abela, L; Moore, J.; Woods, LM; Nur, U; Rachet, B; Allemani, C; Coleman, MP
BACKGROUND: Population-based cancer survival is an important measure of the overall effectiveness of cancer care in a population. Population-based cancer registries collect data that enable the estimation of cancer survival. To ensure accurate, consistent and comparable survival estimates, strict control of data quality is required before the survival analyses are carried out. In this paper, we present a basis for data quality control for cancer survival. METHODS: We propose three distinct ph...
Rusner, Carsten; Streller, Brigitte; Stegmaier, Christa; Trocchi, Pietro; Kuss, Oliver; McGlynn, Katherine A; Trabert, Britton; Stang, Andreas
Testicular cancer survival rates improved dramatically after cisplatin-based therapy was introduced in the 1970s. However, chemotherapy and radiation therapy are potentially carcinogenic. The purpose of this study was to estimate the risk of developing second primary cancers including the risk associated with primary histologic type (seminoma and non-seminoma) among testicular cancer survivors in Germany. We identified 16 990 and 1401 cases of testicular cancer in population-based cancer registries of East Germany (1961-1989 and 1996-2008) and Saarland (a federal state in West Germany; 1970-2008), respectively. We estimated the risk of a second primary cancer using standardized incidence ratios (SIRs) with 95% confidence intervals (95% CIs). To determine trends, we plotted model-based estimated annual SIRs. In East Germany, a total of 301 second primary cancers of any location were observed between 1961 and 1989 (SIR: 1.9; 95% CI: 1.7-2.1), and 159 cancers (any location) were observed between 1996 and 2008 (SIR: 1.7; 95% CI: 1.4-2.0). The SIRs for contralateral testicular cancer were increased in the registries with a range from 6.0 in Saarland to 13.9 in East Germany. The SIR for seminoma, in particular, was higher in East Germany compared to the other registries. We observed constant trends in the model-based SIRs for contralateral testicular cancers. The majority of reported SIRs of other cancer sites including histology-specific risks showed low precisions of estimated effects, likely due to small sample sizes. Testicular cancer patients are at increased risk especially for cancers of the contralateral testis and should receive intensive follow-ups.
Traversa, Giuseppe; Sagliocca, Luciano; Magrini, Nicola; Venegoni, Mauro
The aim of this article is to provide an introduction to issue of Recenti Progressi in Medicina, devoted to the role of drug registries in the post-marketing surveillance. We first motivate the need to implement registries as a tool in promoting the appropriateness of drug use and acquiring additional information on the risk-benefit profile of drugs. Then, the different role that can be played by registries in comparison with prescription monitoring systems and observational studies is clarified. The presentation of some of the most relevant registries established in Italy since the end of the '90s, with the analysis of their strengths and weaknesses, helps to understand some of the crucial issues that should be taken into account before a new registry is adopted. Specifically, we deal with the relationship between objectives - of appropriateness, effectiveness and safety - and methods; the overlapping between drug-based registries and disease-based ones; the duration and extension of data collection, which may be either exhaustive or based on a sampling frame; the importance of ensuring the quality of the data and to minimize the number of subjects who are lost to follow-up; the importance of infrastructures, and of ad hoc funding, for the functioning of a registry; the independence in data analysis and publication of findings.
E. L. Nasonov
Full Text Available The paper presents the materials of the Russian Arthritis Registry (OREL that includes 3276 patients from 11 Russian Federation's largest research-and-practical centers situated in Moscow, Saint Petersburg, Novosibirsk, Kazan, Tula, Yaroslavl, Tyumen. It discusses the main goals of setting up registries, compares the results of an analysis of the data available in the Russian Registry OREL and registries of European countries and the USA. The findings suggest that there is non-uniform information on clinical, laboratory, and instrumental parameters in the national registers of a number of European countries and the USA. According to its basic characteristics, the Russian Registry OREL compares favorably with a number of other registries in the completeness of data collection, which allows a general idea of rheumatoidarthritis (RA patients in Russia. For further development of the OREL Registry, it is necessary to concentrate our attention on the following main areas: to improve the quality of filling out documents; to follow-up patients receiving different RA therapy regimens according to the guidelines of the Association of Rheumatologists of Russia for the treatment of RA; to conduct in-depth studies of comorbidity, primarily depressive disorders; to analyze adverse reactions that make RA therapy difficult; to actively use modules for patients' self-rating of their condition; to develop nursing care, etc.
Patrick, Jon; Asgari, Pooyan; Li, Min; Nguyen, Dung
A Natural Language processing (NLP) classifier has been developed for the Victorian and NSW Cancer Registries with the purpose of automatically identifying cancer reports from imaging services, transmitting them to the Registries and then extracting pertinent cancer information. Large scale trials conducted on over 40,000 reports show the sensitivity for identifying reportable cancer reports is above 98% with a specificity above 96%. Detection of tumour stream, report purpose, and a variety of extracted content is generally above 90% specificity. The differences between report layout and authoring strategies across imaging services appear to require different classifiers to retain this high level of accuracy. Linkage of the imaging data with existing registry records (hospital and pathology reports) to derive stage and recurrence of cancer has commenced and shown very promising results.
Full Text Available Michele L Ostraat, Karmann C Mills, Kimberly A Guzan, Damaris MurryRTI International, Durham, NC, USAAbstract: The amount of data being generated in the nanotechnology research space is significant, and the coordination, sharing, and downstream analysis of the data is complex and consistently deliberated. The complexities of the data are due in large part to the inherently complicated characteristics of nanomaterials. Also, testing protocols and assays used for nanomaterials are diverse and lacking standardization. The Nanomaterial Registry has been developed to address such challenges as the need for standard methods, data formatting, and controlled vocabularies for data sharing. The Registry is an authoritative, web-based tool whose purpose is to simplify the community's level of effort in assessing nanomaterial data from environmental and biological interaction studies. Because the registry is meant to be an authoritative resource, all data-driven content is systematically archived and reviewed by subject-matter experts. To support and advance nanomaterial research, a set of minimal information about nanomaterials (MIAN has been developed and is foundational to the Registry data model. The MIAN has been used to create evaluation and similarity criteria for nanomaterials that are curated into the Registry. The Registry is a publicly available resource that is being built through collaborations with many stakeholder groups in the nanotechnology community, including industry, regulatory, government, and academia. Features of the Registry website (https://www.nanomaterialregistry.org/ currently include search, browse, side-by-side comparison of nanomaterials, compliance ratings based on the quality and quantity of data, and the ability to search for similar nanomaterials within the Registry. This paper is a modification and extension of a proceedings paper for the Institute of Electrical and Electronics Engineers.Keywords: nanoinformatics
Bülow, S; Harling, H; Iversen, L H
treated from 1994 to 2006. Method The study was based on the National Rectal Cancer Registry and the National Colorectal Cancer Database, supplemented with data from the Central Population Registry. The analysis included actuarial overall and relative survival. Results A total of 10 632 patients were......Objective In 1995, an analysis showed an inferior prognosis after rectal cancer in Denmark compared with the other Scandinavian countries. The Danish Colorectal Cancer Group (DCCG) was established with the aim of improving the prognosis, and in this study we present a survival analysis of patients...... operated on. The overall 5-year survival increased from 0.37 in 1994 to 0.51% in 2006; the improvement was greater in men (20% points) than in women (10% points), and greatest in stage III (20% points). The relative 5-year survival increased from 0.46 to 0.62, including an improvement of 23% points in men...
Engberg, Henriette; Wehberg, Sonja; Bistrup, Claus;
to examine whether post-transplant cancer and all-cause mortality differed between Danish renal transplantation centres using standard immunosuppressive protocols including steroids (Centres 2, 3, 4) or a steroid-free protocol (Centre 1). The Danish Nephrology Registry, the Danish Civil Registration System......BACKGROUND: Kidney recipients receive immunosuppression to prevent graft rejection, and long-term outcomes such as post-transplant cancer and mortality may vary according to the different protocols of immunosuppression. METHODS: A national register-based historical cohort study was conducted......, the Danish National Cancer Registry and the Danish National Patient Register were used. A historical cohort of 1450 kidney recipients transplanted in 1995-2005 was followed up with respect to post-transplant cancer and death until 31 December 2011. RESULTS: Compared with Center 1 the adjusted post...
Full Text Available In the subject of rare diseases, experience and knowledge is limited. With a rare disease registry, longitudinal data can be added to increase information of them and to improve the quality of medical care and the patient outcome. Registries, unlike randomized controlled trials, provide a source of real-time information to develop guidelines for monitoring and to support patient management. Registries are essential to show the real situation of rare diseases and to establish management goals in order to address the unmet needs of the patients.
Ieva, Francesca; Gale, Chris P; Sharples, Linda D
Clinical registries are established as tools for auditing clinical standards and benchmarking quality improvement initiatives. They also have an emerging role (as electronic health records) in cardiovascular research and, in particular, the conduct of RCTs. While the RCT is accepted as the most robust experimental design, observational data from clinical registries has become increasingly valuable for RCTs. Data from clinical registries may be used to augment results from RCTs, identify patients for recruitment and as an alternative when randomization is not practically possible or ethically desirable. Here the authors appraise the advantages and disadvantages of both methodologies, with the aim of clarifying when their joint use may be successful.
Lo, E K
Some information on cancer in Malaysia are available, and its epidemiology is described. There is a need for systematic and coordinated collection of cancer statistics which are essential to patient management, cancer control programme formulation, implementation and evaluation. The decision of the Ministry of Health to introduce National Cancer Registry and to encourage epidemiological studies, which will ultimately lead to the utilization of data and introduction of control and preventive activities for cancers are positive steps in the right direction. Meanwhile, curative and palliative treatment is available from the existing hospital facilities, and preventive activities such as actions on smoking and health will be continued until such time when a comprehensive prevention and control programme for cancers in the country is evolved.
Miller, Scott E.; Trizna, Michael G.; Graham, Eileen; Crane, Adele E.
Abstract The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource. PMID:27660523
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF AGRICULTURE Animal and Plant Health Inspection Service Notice of Establishment of a Veterinary Services Stakeholder... Inspection Service (APHIS) has established a Veterinary Services (VS) Stakeholder Registry, an...
Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed)
This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed.
Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...
Full Text Available Abstract Background Cardiovascular Magnetic Resonance (CMR is increasingly used in daily clinical practice. However, little is known about its clinical utility such as image quality, safety and impact on patient management. In addition, there is limited information about the potential of CMR to acquire prognostic information. Methods The European Cardiovascular Magnetic Resonance Registry (EuroCMR Registry will consist of two parts: 1 Multicenter registry with consecutive enrolment of patients scanned in all participating European CMR centres using web based online case record forms. 2 Prospective clinical follow up of patients with suspected coronary artery disease (CAD and hypertrophic cardiomyopathy (HCM every 12 months after enrolment to assess prognostic data. Conclusion The EuroCMR Registry offers an opportunity to provide information about the clinical utility of routine CMR in a large number of cases and a diverse population. Furthermore it has the potential to gather information about the prognostic value of CMR in specific patient populations.
Löpprich, Martin; Knaup, Petra
Clinical registries are a powerful method to observe the clinical practice and natural disease history. In contrast to clinical trials, where guidelines and standardized methods exist and are mandatory, only a few initiatives have published methodological guidelines for clinical registries. The objective of this paper was to review these guidelines and systematically assess their completeness, usability and feasibility according to a SWOT analysis. The results show that each guideline has its own strengths and weaknesses. While one supports the systematic planning process, the other discusses clinical registries in great detail. However, the feasibility was mostly limited and the special requirements of clinical registries, their flexible, expandable and adaptable technological structure was not addressed consistently.
Taoka, Sharyl; Hancock, Thane; Ngaden, Victor; Yow, A Richter; Durand, A Mark
Little is known about the impact of cancer and the extent of cancer-related services in Yap. The purpose of this study, funded by the National Cancer Institute, was to document the state of cancer awareness and services in Yap and to prioritize cancer-care needs. Findings suggest that cancer is the leading cause of death in Yap, yet cancer-related awareness, prevention, detection, and treatment services are limited. A number of needs were identified, and an action plan was developed based on five priority areas: 1) establishing a cancer registry; 2) increasing awareness of cancer risk, prevention, and detection; 3) expanding cancer screening and detection programs; 4) expanding cancer-related training opportunities for clinical staff; and 5) purchasing cancer-related equipment & supplies.
Julia; B; Greer; Mark; H; Yazer; Jay; S; Raval; M; Michael; Barmada; Randall; E; Brand; David; C; Whitcomb
AIM:To evaluate whether the ABO blood group is related to pancreatic cancer risk in the general population of the United States.METHODS:Using the University of Pittsburgh's clinicalpancreatic cancer registry,the blood donor database from our local blood bank (Central Blood Bank),and the blood product recipient database from the regional transfusion service (Centralized Transfusion Service) in Pittsburgh,Pennsylvania,we identified 274 pancreatic cancer patients with previously determined serological ABO bloo...
Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M.; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G.; Hoitsma, Andries; Ioannidis, George A.; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W.M.; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S.; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J.
Background This article provides a summary of the 2011 ERA–EDTA Registry Annual Report (available at www.era-edta-reg.org). Methods Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and renal transplant rates in 2011. In addition, survival probabilities and expected remaining lifetimes were calculated for those registries providing individual patient data. Results The overall unadjusted incidence rate of RRT in 2011 among all registries reporting to the ERA–EDTA Registry was 117 per million population (pmp) (n = 71.631). Incidence rates varied from 24 pmp in Ukraine to 238 pmp in Turkey. The overall unadjusted prevalence of RRT for ESRD on 31 December 2011 was 692 pmp (n = 425 824). The highest prevalence was reported by Portugal (1662 pmp) and the lowest by Ukraine (131 pmp). Among all registries, a total of 22 814 renal transplantations were performed (37 pmp). The highest overall transplant rate was reported from Spain, Cantabria (81 pmp), whereas the highest rate of living donor transplants was reported from Turkey (39 pmp). For patients who started RRT between 2002 and 2006, the unadjusted 5-year patient survival on RRT was 46.8% [95% confidence interval (CI) 46.6–47.0], and on dialysis 39.3% (95% CI 39.2–39.4). The unadjusted 5-year patient survival after the first renal transplantation performed between 2002 and 2006 was 86.7% (95% CI 86.2–87.2) for kidneys from deceased donors and 94.3% (95% CI 93.6–95.0) for kidneys from living donors. PMID:25852881
Full Text Available Abstract Background We established a trauma registry in 2003 to collect data on trauma patients, which is a major cause of death in the United Arab Emirates (UAE. The aim of this paper is to report on the long term effects of our early analysis of this registry. Methods Data in the early stages of this trauma registry were collected for 503 patients during a period of 6 months in 2003. Data was collected on a paper form and then entered into the trauma registry using a self-developed Access database. Descriptive analysis was performed. Results Most were males (87%, the mean age (SD was 30.5 (14.9. UAE citizens formed 18.5%. Road traffic collisions caused an overwhelming 34.2% of injuries with 29.7% of those involving UAE citizens while work-related injuries were 26.2%. The early analysis of this registry had two major impacts. Firstly, the alarmingly high rate of UAE nationals in road traffic collisions standardized to the population led to major concerns and to the development of a specialized road traffic collision registry three years later. Second, the equally alarming high rate of work-related injuries led to collaboration with a Preventive Medicine team who helped with refining data elements of the trauma registry to include data important for research in trauma prevention. Conclusion Analysis of a trauma registry as early as six months can lead to useful information which has long term effects on the progress of trauma research and prevention.
McMurry, Julie; Parkinson, Helen; Gormanns, Philipp; Muilu, Juha; Sariyar, Murat; Swertz, Morris; Hendriksen, Dennis; Kelpin, Fleur; Jetten, Jonathan; Pang, Chao
The development of a prototype data model registry is the objective of BioMedBridges Deliverable 3.2, with contributions from project partners and in collaboration with BBMRI. The overall aim is to promote FAIR principles for data (Find, Access, Integrate and Reuse), therefore the Meta Models and Mappings Registry is designed to make it easier for researchers, data stewards and tools producers to find, compare, and choose existing data models, formats, and guidelines, and in particular to pro...
Traversa, Giuseppe; Sagliocca, Luciano; Magrini, Nicola; Venegoni, Mauro
Drug registries are implemented after the authorization of new products and represent a tool for systematic collection of data aimed at obtaining additional knowledge on appropriateness, effectiveness and safety. The design of registries needs to be coherent with the main objective and a study protocol is required before the implementation. A registry aimed at the appropriateness of drug use should be primarily considered for high cost drugs when there is a risk, either for the patients' safety or for public expenditure, in using the drug outside the approved indications. Since the registry is a condition for the access to drugs, and all users are included, an extremely simplified data collection is required. However, the data should be available at regional level to allow record linkage procedures with other databases for conducting outcome studies. When registries are aimed at acquiring new information on the risk profile, the duration and the regional extension of data collection should be coherent with the expected incidence of events of interest. A great attention should be devoted in preventing that patients are lost to follow-up, since the reasons for being lost are frequently associated with harmful outcomes, such as adverse drug reactions. In a registry focused on effectiveness, the main aim consists in ascertaining the reasons (the prognostic factors), for possible discrepancies between premarketing studies and clinical practice. Taking into account the greater incidence of the expected events, there are fewer reasons for extending data collection to all users, whereas the main attention should focus on quality controls and the ascertainment of confounding factors. Given the relevance of the validity issues, in the set out of a registry it is important to think about ad hoc resources and the adequacy of infrastructures. As for any epidemiological study, an adequate qualification of the researcher/clinician in charge of conducting a registry should be
Erekson, Elisabeth A; Iglesia, Cheryl B
Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver.
Full Text Available Background: Natural history of optic neuritis (OPN has not been studied in India. Aim: To study consecutive patients with optic neuritis as the initial manifestation of the neurologic disease and with disease duration of 3 or more years registered in the Mangalore Demyelinating Disease Registry. Materials and Methods: The study included 59 patients with a primary diagnosis of optic neuritis (confirmed by either an ophthalmologist or a neurologist or both. All the patients were investigated and followed-up in the clinic. Results: During the follow-up of the 59 patients, 29 (49% patients developed multiple sclerosis (MS; 3 (5% patients neuromyelitis optica (NMO; and 13 (22% patients chronic relapsing inflammatory optic neuritis (CRION, while the remaining 14 (24% did not either progress or relapse, monophasic OPN. An initial abnormal magnetic resonance imaging predicted conversion to MS in all 7 patients who had imaging at onset. Patients with NMO were left with significant residual visual loss distinguishing NMO from MS. In this large series of patients with CRION, nearly 50% of patients had deterioration in vision while steroids were being tapered. Long-term immunosuppression was essential for maintaining good visual outcome in both NMO and CRION. Conclusions: Optic neuritis in India appears similar to that in the West with nearly 50% developing MS in the long term.
Sinnett, Philip Marcus; Carr, Branden; Cook, Gregory; Mucklerath, Halie; Varney, Laura; Weiher, Matt; Yerokhin, Vadim; Vassar, Matt
We examined the use of clinical trials registries in published systematic reviews and meta-analyses from clinical neurology. A review of publications between January 1, 2008 and December 31, 2014 from five neuroscience journals (Annals of Neurology, Brain, Lancet Neurology, Neurology, and The Neuroscientist) was performed to identify eligible systematic reviews. The systematic reviews comprising the final sample were independently appraised to determine if clinical trials registries had been included as part of the search process. Studies acknowledging the use of a trials registry were further examined to determine whether trial data had been incorporated into the analysis. The initial search yielded 194 studies, of which 78 systematic reviews met the selection criteria. Of those, five acknowledged the use of a specific clinical trials registry: four reviewed unpublished trial data and two incorporated unpublished trial data into their results. Based on our sample of systematic reviews, there was no increase in the use of trials registries in systematic review searches over time. Few systematic reviews published in clinical neurology journals included data from relevant clinical trials registries.
Couchoud, Cécile; Duman, Mirela; Frimat, Luc; Ryckelynck, Jean-Philippe; Verger, Christian
The 2 registries RDPLF and Rein are information systems concerning the treatment of end-stage renal disease. The aim of the study was to evaluate the representativeness and exhaustivity of the recorded cases as well as the accuracy of the informations in the 2 registries. Were included 375 adults, who started a first ESRD treatment between 1 January 2003 and 31 December 2003 in 7 French regions and were treated by peritoneal dialysis (PD) on the first day of the 4th month of ESRD treatment. 264 patients were identified found in both registries. Age, body mass index and albuminemia didn't differ significantly. The mean haemoglobin level was higher in RDPLF. There was a good concordance on sex, diabetes status but less so on primary renal disease and PD modalities. There were significant discrepancies between the two registries on the date of the first treatment. The analysis of outcomes (transplantation or death) showed 8 discrepancies related to the lack of recording of the event in one of the 2 registries. The good global agreement observed between Rein and RDPLF for the common data emphasizes the fiability and representativeness of the 2 structures and the synergy of their activities for a best evaluation of the quality of peritoneal dialysis. This study shows the necessity of a common patient identification that will allow us to maintain a good complementarity between the 2 registries and will favour common studies.
Pan William KY
Full Text Available Abstract Background Immunizations have reduced childhood vaccine preventable disease incidence by 98–100%. Continued vaccine preventable disease control depends on high immunization coverage. Immunization registries help ensure high coverage by recording childhood immunizations administered, generating reminders when immunizations are due, calculating immunization coverage and identifying pockets needing immunization services, and improving vaccine safety by reducing over-immunization and providing data for post-licensure vaccine safety studies. Despite substantial resources directed towards registry development in the U.S., only 48% of children were enrolled in a registry in 2004. Parental attitudes likely impact child participation. Consequently, the purpose of this study was to assess the attitudes of parents of vaccinated and unvaccinated school-aged children regarding: support for immunization registries; laws authorizing registries and mandating provider reporting; opt-in versus opt-out registry participation; and financial worth and responsibility of registry development and implementation. Methods A case control study of parents of 815 children exempt from school vaccination requirements and 1630 fully vaccinated children was conducted. Children were recruited from 112 elementary schools in Colorado, Massachusetts, Missouri, and Washington. Surveys administered to the parents, asked about views on registries and perceived utility and safety of vaccines. Parental views were summarized and logistic regression models compared differences between parents of exempt and vaccinated children. Results Surveys were completed by 56.1% of respondents. Fewer than 10% of parents were aware of immunization registries in their communities. Among parents aware of registries, exempt children were more likely to be enrolled (65.0% than vaccinated children (26.5% (p value = 0.01. A substantial proportion of parents of exempt children support immunization
Full Text Available Abstract Background We compared the risk of being diagnosed with smoking-related cancers (lung, oral cavity, upper digestive and respiratory organs, bladder, kidney, anogenital cancers and myeloid leukaemia among people with squamous cell carcinoma (SCC or basal cell carcinoma of the skin (BCC, with risks found in the general population using data from an Australian population-based cancer registry. Methods People diagnosed with BCC or SCC in 1980-2003 reported to the Tasmanian Cancer Registry, Australia, were followed-up by linkage within the registry, until diagnosis of a subsequent smoking-related cancer, death, or until 31 December 2003. Risk of developing a future smoking-related cancer was assessed using age Standardised Incidence Ratios (SIR. Results People diagnosed with SCC had an increased risk of lung cancer (men: SIR = 1.89, 95% confidence interval: 1.61-2.21; women: SIR = 2.04, 1.42-2.83 and all other smoking-related cancers (men: SIR = 1.38, 1.19-1.60; women: SIR = 1.78, 1.34-2.33. Men with BCC had a significant increased risk of lung cancer (SIR = 1.26, 1.10-1.44 but not of any of the other smoking-related cancers (SIR = 1.09, 0.97-1.23. Conclusions Individuals with a history of SCC having an increased risk of developing smoking related cancers cancer suggests smoking as a common etiology. The relationship between BCC and smoking-related cancers is less certain.
Klein, A P; Hruban, R H; Brune, K A; Petersen, G M; Goggins, M
Pancreatic cancer is the fourth leading cause of cancer death in both men and women in the United States and will be responsible for an estimated 28,900 deaths in 2001. Relatively little is known of its etiology, and the only well-established risk factor is cigarette smoking. Studies over the past 3 decades have shown that 4%-16% of patients with pancreatic cancer have a family history of the disease. A small fraction of this aggregation can be accounted for in inherited cancer syndromes, including familial atypical multiple-mole melanoma, Peutz-Jeghers syndrome, hereditary breast-ovarian cancer, hereditary pancreatitis, and hereditary nonpolyposis colorectal cancer. These syndromes arise as a result of germline mutations in the BRCA2, pl6 (familial atypical multiple-mole melanoma), mismatch repair (hereditary nonpolyposis colorectal cancer), and STK11 (Peutz-Jeghers syndrome) genes. In addition, hereditary plays a role in predisposing certain patients with apparently sporadic pancreatic cancer. Many patients with pancreatic cancers caused by a germline mutation in a cancer-causing gene do not have a pedigree that is suggestive of a familial cancer syndrome. A recent prospective analysis of the pedigrees in the National Familial Pancreatic Tumor Registry found that individuals with a family history of pancreatic cancer in multiple first-degree relatives have a high risk of pancreatic cancer themselves. The identification of such high-risk individuals will help clinicians target screening programs and develop preventive interventions with the hope of reducing the mortality of pancreatic cancer in these families.
Full Text Available Abstract Background This study is a pre-planned country-specific subanalysis of results in Germany from a multinational multicenter registry to prospectively assess real-world experience with caspofungin administered for treatment of proven or probable invasive aspergillosis (IA. Methods Data from patients treated with caspofungin for a single episode of IA were collected. Effectiveness was determined by the local investigator as favorable (complete or partial response or unfavorable (stable disease, failure or death at the end of caspofungin therapy. Descriptive statistics with binomial exact confidence intervals were employed. Results Forty-two consecutive patients were identified in three German centers. Three patients (7% had proven IA and 39/42 (93% had probable IA (modified European Organization for Research and Treatment of Cancer/Mycosis Study Group (EORTC/MSG criteria. Forty-one patients had pulmonary IA and one had tracheal IA. Caspofungin monotherapy was received by 36/42 patients (86%; of these, 26/36 (72% received salvage therapy. A favorable response was observed in 29/42 patients (69%; 95% CI 53 to 82%; of these, 21/29 (72% had a complete and 8/29 (28% a partial response. Favorable response rate was 69% in patients with monotherapy (95% CI 52% to 84%; 25/36 patients, and 67% in patients receiving combination therapy (95% CI 22% to 96%; 4/6 patients. Favorable response rate in patients with first line therapy was 64% (95% CI 31% to 89%; 7/11 patients, and 73% in patients with second line therapy (95% CI 54% to 88%; 20/30 patients. No adverse events were reported. In total, 35/42 patients (83%; 95% CI 69 to 93% survived seven days after completion of caspofungin therapy. Conclusions These real-life findings in Germany are consistent with the international findings from this registry and with findings from randomized studies.
Lanctôt, H.; Beaudet, N.; Boulanger, A.; Bourgault, P.; Cloutier, C.; De Koninck, Y.; Dion, D.; Dolbec, P.; Germain, L.; Sarret, P.; Shir, Y.; Taillefer, M.-C.; Trépanier, A.; Truchon, R.
The Quebec Pain Registry (QPR) is a large research database of patients suffering from various chronic pain (CP) syndromes who were referred to one of five tertiary care centres in the province of Quebec (Canada). Patients were monitored using common demographics, identical clinical descriptors, and uniform validated outcomes. This paper describes the development, implementation, and research potential of the QPR. Between 2008 and 2013, 6902 patients were enrolled in the QPR, and data were collected prior to their first visit at the pain clinic and six months later. More than 90% of them (mean age ± SD: 52.76 ± 4.60, females: 59.1%) consented that their QPR data be used for research purposes. The results suggest that, compared to patients with serious chronic medical disorders, CP patients referred to tertiary care clinics are more severely impaired in multiple domains including emotional and physical functioning. The QPR is also a powerful and comprehensive tool for conducting research in a “real-world” context with 27 observational studies and satellite research projects which have been completed or are underway. It contains data on the clinical evolution of thousands of patients and provides the opportunity of answering important research questions on various aspects of CP (or specific pain syndromes) and its management. PMID:28280406
Holm, Ann-Sofie; Nissen, Christoffer V; Wulf, Hans Christian
Reliable estimates of disease incidence are fundamental to planning future healthcare services. However, in many countries registration of basal cell carcinoma (BCC) is often non-existent. This study examines how many BCC treatments were carried out in Denmark in 2013. The Danish Cancer Registry...... records are inadequate in relation to BCC registration, as BCCs treated are 3 times the number of individuals in the Danish Cancer Registry, and there are nearly as many BCCs as the sum of all other cancers. The increasing BCC incidence will result in difficulties in ensuring treatment capacity....